Photo of a first grade classroom by Douglas P. Perkins from Wikipedia Commons under Creative Commons Attribution 3.0.
Sarah Michelle Thomas
Joint Specialization program
Department of Sociology & Anthropology, Concordia University
15 August 2018
This probe aims to shed light on the unequal treatment of Autistic people in Canadian and Western society. I will first discuss the Canadian court case Auton vs. British Columbia which relates to autism and more precisely Applied Behavioral Analysis (ABA) therapy, the most common therapy for autism. Second, I will delve deeper into the discourse, research and experiences of Autistic people surrounding ABA therapy. My goal in this probe is to problematize or “trouble” the way we commonly understand and approach autism.
In Auton vs British Columbia, several parents with Autistic children brought an action against the British Columbia government to fund Lovaas style intensive behavioral therapy claiming that “the province’s refusal to pay for [the treatment] violated equality rights guaranteed under the Charter of Rights and Freedoms.” The Lovaas treatment is a form of Applied Behavioral Analysis (ABA).
“ABA uses careful behavioural observation and positive reinforcement or prompting to teach each step of a behaviour. A child’s behaviour is reinforced with a reward when he or she performs each of the steps correctly. Undesirable behaviours, or those that interfere with learning and social skills, are watched closely. The goal is to determine what happens to trigger a behaviour, and what happens after that behaviour to reinforce it. The idea is to remove these triggers and reinforcers from the child’s environment. New reinforcers are then used to teach the child a different behaviour in response to the same trigger.”
In 2000, the British Columbia Supreme Court ruled that the treatment is “a medical necessity” and the province must pay for it under the Charter of Rights equality guarantees. In the Reasons for Judgment of the Honourable Madame Justice Allan, Justice Allan affirms:
”Among children with untreated autism or autism spectrum disorders, about half of all pre-school age children (ages 2 to 6) are non-verbal. Most have limited attachment to caregivers, display little interest in pleasing them, evade eye contact and resist displays of physical affection. In a group of peers, a child with autism is likely to avoid contact and remain isolated from the group. Instead of playing imaginatively with toys, autistic children often engage in repetitive behaviour such as arranging objects into neat rows or flapping their hands in front of their eyes. When these behaviours are interrupted, or when they do not get their way, many autistic children have intense tantrums that may include aggression toward others or self-injurious behaviour such as banging their heads against hard objects. (…) Only one of 64 children will show any improvement without treatment”
In 2002, the B.C. Court of Appeal upheld the decision of the Supreme Court of British Columbia. In the Reasons for Judgment of the Honourable Madame Justice Saunders, Justice Saunders asserts that “without successful treatment the condition almost always results in a life of “physical, emotional, social and intellectual isolation and eventual institutionalization””. Her statement also sheds light on the petitioners’ motivation. It is observed that the petitionders “contend in this action that treatment in the nature of that applied by Dr. Lovaas is the only form of treatment that holds a reasonable prospect of alleviating the symptoms and of allowing the infant petitioners to avoid a life of isolation and institutionalization”.
In 2004, the Auton case arrived at the Supreme Court of Canada. While, once again, disagreeing on who should be responsible for funding ABA treatment, both sides, the parents and the government of British Columbia, agreed with the dire prognostic of untreated autism. One of the respondents, Sabrina Freeman, describes her daughter, who was four years old at the time she began treatment, as follows: now “a Grade 10 student in Langley, B.C., [the girl] was ‘a living nightmare’ [before] she began treatment … She was in her own little world; she basically sang at the top of her lungs every waking moment”. Freeman also affirms that without treatment “her daughter probably would have been doomed to a life of institutionalized misery, self-mutilation and, perhaps, suicide.” The appellants did not challenge the premise that untreated Autistic people are “doomed.” Statements supporting this premise were made by the majority of interveners. The “Counsel for the intervener FEAT of Ontario, speaking in support of the Respondents,” claimed that, “without Lovaas-type early intensive behavioral interventions, autistics will be less than half living.”
These statements highlight an understanding of autism that underscores the debility, occasionally resulting in fatality, of living with autism. With such a dire perception of autism, who can blame parents for wanting ABA therapy for their children at any cost? Yet, there are those who believe that this perception of autism is erroneous and misleading. Such is the case of intervener Michelle Dawson, who intervened in dissent of both the respondents and appellants before the SCC. Michelle Dawson applied to intervene in the Auton trial on the basis that the lack of Autistic representation and the inaccurate evidence surrounding Autistic people in the previous Auton trials, both at the British Columbia Supreme Court and at the Court of Appeal of British Columbia, “reveal a fundamental perception of autistic individuals that is inconsistent with the notions underlying the prohibition of discrimination found in fundamental Canadian values”. Despite her application being opposed both by the parents and the government of British Columbia, Michelle Dawson was granted leave to intervene. In her factum, she challenges the premise that autistic people are intrinsically lacking:
“It must be underlined that autism is not a disease. Untreated autistics do not deteriorate and die. Mistreated autistics often deteriorate. This should not be assumed to be a feature of autism. Mistreated non-autistics, subject to prejudicial low expectations and poor care, also deteriorate.
It is true that “untreated” autistic communication, learning, and intelligence, as well as order and progress of development, fail to be typical. It is false to conclude from this, or to assume that autistic communication, learning, intelligence, and developmental progress are either non-existent, or inferior and worthless.
No allowance is made by either the parties, or the Courts below that “untreated” autistic traits, which result in atypical learning and intelligence, have great benefit both to autistics and to society. The inherent strengths of autistics, based on measurable differences in cognition (perception, attention, memory; and kind, not level, of intelligence) are unavailable to non-autistics, and according to the principles of ABA as well as its practice, are unavailable to treated autistics.
Untreated autistic individuals have contributed greatly to society through their autistic traits. In contrast to the doom painted by the parties for all untreated autistics, autistics are in the workforce, they are in academe, they are parents (often of autistic children), they are artists, architects, engineers, physicists, musicians, and writers. Many have, through the brilliance, innovation, impartiality, persistence, and courage with which they are gifted, disproportionately contributed to the progress and enlightenment of society.”
The idea that Autistic people can be and remain Autistic and lead fulfilling lives and contribute to society is not a supposition unique to Ms Dawson. Indeed, the neurodiversity movement, a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent,” has put forward a position that provides strong backing for Ms Dawson’s stance. It is called the neurodiversity paradigm, and here are some of its tenets:
1.) Neurodiversity is a natural and valuable form of human diversity.
2.) The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture.
3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.
The neurodiversity paradigm stands in opposition to the pathology paradigm. According to the latter:
“there is one “right” style of human neurocognitive functioning. Variations in neurocognitive functioning that diverge substantially from socially constructed standards of “normal” – including the variations that constitute autism – are framed within this paradigm as medical pathologies, as deficits, damage, or “disorders.””
The pathology paradigm is evident in the discourses surrounding autism in the Auton trial. This paradigm creates a power dynamic where neurotypical brains are considered superior to their neurodivergent counterparts and where the end goal for neurodivergent people, in this case Autistic people, is to become neurotypical and/or “normal”, or at least pass as “normal”. This is evident in ABA therapy where “recovery” and “becoming indistinguishable from peers” are the epitome of successful treatment (as defined by Lovaas). Furthermore, the power dynamic between neurotypical people and neurodivergent people justifies the use of coercion and violence towards neurodivergent people in order to treat their less than desirable neurodivergence. In the result, human rights, ethics and consent standards are different for neurodivergent people, in this case Autistic people. In the Auton trial, Ms Dawson argues that “Implicit in these proceedings is the notion that autistics are inhuman, and must be therefore made human. It is only then that their rights will have been respected.” She underscores the denial of Autistic people’s autonomy and human rights in their daily lives.
“Ms Dawson is familiar with the precarious state of the life, liberty, and security of autistics in Canadian society. Unlike deaf people, for instance, autistics cannot identify themselves as autistic in most situations without variously putting their health, security, liberty, autonomy, and employment at risk. Autistics learn not to seek emergency care, since if they act autistic, even while identifying themselves as such, they are at risk of being “institutionalized”, that is, committed against their will.
“Autistic Canadians must face a barrage of intolerance. They may have repeatedly to explain that they are not dangerous to themselves or others. They may have to explain that autistic people talk. They often are treated with suspicion by health care professionals who “know” that autism is incompatible with intelligence.”
In her factum she asserts that the denial of humanity of Autistic people is the foundation of ABA therapy. To support her argument she quotes Lovaas himself:
“the fascinating part for me was to observe persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors one would call social or human. Now, I had the chance to build language and other social and intellectual behaviors where none had existed, a good test of how much help a learning-based approach could offer.”
This quote is from O. I. Lovaas’ 1993 article on “The development of a treatment-research project for developmentally disabled and autistic children” published in the Journal of Applied Behavior Analysis, 26, 617-30
Besides denying Autistic people’s humanity until they become “indistinguishable from peers”, countless studies and testimonies expose a wide range of concerns with ABA therapy. Little consideration was given to the impact of ABA treatment on Autistic children during the Auton trial beyond its efficacy in rendering Autistic children “indistinguishable from peers.” Yet one study found that exposure to ABA increased the odds of having PTSD by 86%. There are countless testimonies by Autistic people surrounding the trauma and ill effects of ABA therapy methods and enforced “neurotypical” behavior. Julia Bascom, an Autistic woman, writer, and advocate, writes about her experience in ABA therapy. A common expression in ABA therapy is “Quiet hands”. It demands of Autistic children that they stop stimming (short for self stimulatory) behavior, for instance, flapping their hands. It is usual practice in ABA therapy to restrain children’s hands if they are stimming.
“When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed
In a classroom of language-impaired kids, the most common phrase is a metaphor.
“Quiet hands!”
A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until:
“Quiet hands!”
I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.
The literal meaning of the words is irrelevant when you’re being abused.
When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.
Hands are by definition quiet, they can’t talk, and neither can half of these students…
(Behavior is communication.)
(Not being able to talk is not the same as not having anything to say.)”
Some say that the recommended 40 hours of treatment a week starting as early as 18 months is overwhelming and exhausting for children. Others highlight the dangerous effect of compliance training where “once you give a command as an ABA Therapist, you must follow through with it no matter what. If a child tries to cry or escape or engage in any other “behaviors,” you can’t give in, because then you are only reinforcing their bad behaviors and making it more likely that they’ll use them in the future”. Many fear that compliance training teaches Autistic children that they cannot say no and leaves them vulnerable to further abuse. A study indicates that ABA style repetitive training actually hinders Autistic learning. Besides, many worry that ABA’s attempts to desensitize Autistic children by forcing them to touch things that feel unpleasant to them, for example, can be profoundly traumatic because it doesn’t take into account that sensory issues have a neurological basis and that “being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away”.
A recent study found evidence that, for Autistic people, avoiding eye contact is “a way to decrease an unpleasant excessive arousal stemming from overactivation in a particular part of the brain.” In other words, the neurology of Autistic people can make eye contact a physically painful experience. Therefore, forcing Autistic children to make eye contact, as in ABA therapy, can cause pain and trauma for these children. Another concern for many Autistic advocates is that despite having removed aversives such as electric shocks and hitting from (most) ABA therapy, it is common practice to withhold rewards such as toys, food, breaks and even affection if the child is not complying.
Many Autistic people and their allies also believe that the underlying philosophy of ABA denies Autistic people’s humanity. Why do Autistic people need to become “indistinguishable from peers”? Flapping hands, avoiding eye contact, having intense and specific interests and many other Autistic traits cause no harm and often benefit Autistic people. Julia Bascom writes:
“Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your runs on the familiar tracks of an obsession and lights your way through the day.
“It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.”
A recently coined theory of autism called “Intense World” theory is challenging the dominant discourse surrounding autism. Neuroscientists Henry Markham and Kamila Senderek argue that autism is not a cognitive deficit but rather “the consequence of a supercharged brain that makes the world painfully intense”; furthermore, “the symptoms are largely because autistics are forced to develop strategies to actively avoid the intensity and pain. Autistics see, hear, feel, think, and remember too much, too deep, and process information too completely”. In other words, Autistic brains are hyperresponsive to emotional, cognitive, sensory and social stimuli which can make it difficult to function in an already intensely stimulating world. This theory is backed by multiple scientists as well as many Autistic self-advocates who claim Intense world theory “to be an accurate reflection of their own experiences, and a radical departure from the outdated and socially stigmatizing disease models of the past”. This ties into the previously mentioned research surrounding the painfulness of eye contact and other sensory stimuli. It underscores the impossibility of “training” Autistic people to behave as neurotypical people do against their own neurology. It highlights the potentially damaging and painful effects of “training” away autistic behaviors and sensory coping mechanisms such as stimming and avoiding eye contact. It emphasizes once again that ABA therapy does not benefit Autistic people. Max Sparrow writes:
“when I look around at myself and my fellow adult Autistics and hear their stories, it seems to me that this “indistinguishable from peers” goal is one that only a tiny fraction of Autistic people are able to accomplish. Beyond the relative unattainability of “indistinguishable,” the stress of trying to reach that goal can do long-term damage to a person’s body and to their self-esteem.”
“The dirty truth about “quiet hands” and other attempts to train the autism out of us is that these sorts of therapies — teaching us to look others in the eye, stop fidgeting, stop rocking, stop doing anything that “looks too autistic” — is that these therapies are not really meant to help us. They are meant to make others feel more comfortable around us and to allow others to try to forget that we are Autistic.”
Indeed, despite the mounting evidence that Autistic people may not want to become “indistinguishable from peers” and that trying to erase Autistic traits can cause severe trauma and other ill-effects, the discourse which pathologizes Autism and calls for its eradication maintains its dominance. Other than Michelle Dawson’s factum, the Auton trial was steeped in the pathologization of Autistic people and the denial of their humanity – until treatment. This justified both the authority of neurotypical people over neurodivergent people, here autistic people, and the near absence of autistic people in a trial about autism. For most of the judges, families, British Columbia government representants and other interverners, the use of violence and coercion to make neurodivergent people “normal” and/or to exclude them from society (through institutionalization) was simply assumed to be normative. Despite this, the decision of the Supreme Court of Canada was a small victory. The provincial government was not legally mandated to fund ABA therapy as a “medically necessary” service because Canadians do not have a right to public funding for ALL “medically necessary” services. Notwithstanding the fact the SSC decision did not deny that ABA therapy is “medically necessary”, the SSC decision did acknowledge Ms Dawson’s argument by highlighting “the emergent and controversial nature of this (ABA) therapy”. Ms. Dawson eloquently acknowledges this small victory in her Auton v. British Columbia decision statement:
“Everything that is said, done, and decided about autism in Canada enmeshes the lives of autistic Canadians. Daily, we live practical and emotional consequences of having our fate in the hands of non-autistic factions quarreling over our treatment.
“These factions, ABA parents and governments, are indistinguishable in their convictions about our place, worth, and rights as autistics. For example, their refusal to consider us as equals is identical. So is their adherence to the premise that autistics are inherently doomed. Where they superficially disagree is in the fine print of how autistic differences must be removed from society, and, more detectably, in who should pay for this. …
“This climate experienced a hiatus when Auton traveled to the Supreme Court of Canada (SCC). Autistics, the untreated wasted autistics said by both sides to have no place in society, or in these proceedings, briefly were welcomed, were respected, and were considered. We had rights, we stood equal. In a situation where it seemed we could only lose, we won. Briefly, the sun broke through and we and our allies celebrated, unnoticed.”
In conclusion, I trust that this probe has highlighted the pernicious assumptions and discourses surrounding autism and the ill effects of the resulting treatment of Autistic people. Whether consciously or unconsciously, the hegemony of neurotypical people is sustained through the pathologization of Autistic people, the denial of Autistic rights and the reinforcement of neurotypical behavior at all costs. In this context, the neurodiversity paradigm and the social model of disability (where autism, for example, is disabling because of the lack of accommodation and inclusion on the part of society) threaten the privilege and hegemony of neurotypical people by suggesting that rather than changing neurodivergent folks to fit in a neurotypical mold and society, neurotypical society and attitudes should change to include and accept neurodivergent folks. Stated otherwise, a society that focuses on treating Autistic children through ABA therapy, on finding a cure for autism and/or on developing a blood test or finding the genetic markers to predict autism in prenatal testing (this testing is similar to the prenatal Down syndrome tests; Canada has an estimated 80-90 percent termination rate of babies who test positive for Down syndrome.) maintains a societal structure that benefits the neurotypical and establishes their dominance over neurodivergent people, in this case Autistic people. I have no doubt that the parents in the Auton trial wanted to help their Autistic children. Though it may be true that ABA therapy could perhaps enable some Autistic children to pass as neurotypical children which, in turn, might grant them neurotypical privilege and a higher position in the social hierarchy; this argument nevertheless remains based on a premise that enforces the denial of Autistic humanity. Like ABA therapy’s predecessor, the feminine boy project, which aimed to prevent homosexuality by using behavior intervention to swap female-coded activities to male-coded activities in young boys, ABA therapy is founded on the belief that it is easier to change behaviors that are deemed problematic by society than it is to change society. In other words, it is easier to modify Autistic and/or gay behaviors in children than it is for society to make space for Autistic or gay people to co-exist equally with non-Autistic or straight people. This belief is probably not inaccurate; however, it is unethical, even more so when account is taken of its impact on the lives of Autistic people.
Disability accommodations vary in the same way that autism varies. For some, this means augmentative and alternative communication strategies (AAC) such as speech generating devices. For others, this means sensory accommodation in the classroom and work space that take into account the amount of sensory stimulation in a space and offers sensory tools to help cope with this stimulation. All things considered, when Autistic advocates and allies demand acceptance, accommodation and equal rights they challenge the established order and the discourse surrounding their status – and their humanity. I can only hope that this probe might encourage readers to join them, and start to challenge this established order and discourse in their daily lives, in order to create a more accepting, equal and supportive society.
Further reading
Abraham, Carolyn. “Genetic finding paves way for controversial autism testing.” The Globe and Mail, 9 June 2010. Accessed July 1st, 2021.
Auton et al v Attorney General (British Columbia), 2000 BCSC 1142.
Auton et al v Attorney General (British Columbia), 2002 BCCA 538.
Auton (Guardian ad litem of) v. British Columbia (Attorney General), 2004 SCC 78.
Bascom, Julia. “Quiet Hands.” Just Stimming…, 5 Oct. 2011. Accessed July 1st, 2021.
Bascom, Julia. “The Obsessive Joy Of Autism.” Just Stimming…, 5 Apr.. 2011. Accessed July 1st, 2021.
Cox, David. “Are we ready for a prenatal screening test for autism?” The Guardian, 1 May 2014. Accessed July 1st, 2021.
Dawson, Michelle. “An Autistic at the Supreme Court – The Auton Case: Application, Opposition, Order.” No Autistics Allowed: Explorations in discrimination against autistics. Accessed July 1st, 2021.
Dawson, Michelle. “An Autistic at the Supreme Court – The Auton Case: The Intervenor’s Factum.” No Autistics Allowed: Explorations in discrimination against autistics. Accessed July 1st, 2021.
Dawson, Michelle. “An Autistic Victory: The True Meaning of the Auton Decision.” No Autistics Allowed: Explorations in discrimination against autistics, 30 March 2005. Accessed July 1st, 2021.
Dawson, Michelle. “The Many Varieties of Being Written Off: An Argument About Autism As Catastrophe.” No Autistics Allowed: Explorations in discrimination against autistics, 15 June 2004. Accessed July 1st, 2021.
Dawson, Michelle. “The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA Industry.” No Autistics Allowed: Explorations in discrimination against autistics, 18 Jan. 2004. Accessed July 1st, 2021.
DeVita-Raeburn, Elizabeth and Spectrum. “Is the Most Common Therapy for Autism Cruel?” The Atlantic, 11 Aug. 2016. Accessed July 1st, 2021.
Kix, Paul. “The Shocking Truth.” Boston Magazine, 17 June 2008. Accessed July 1st, 2021.
Kupferstein, Henny. “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis.” Advances in Autism, 2 Jan. 2018. Accessed July 1st, 2021.
Makin, Kirk. “Will the Supreme Court really dictate health policy to a government elected by the people? Stayed tuned, says KIRK MAKIN, because we’re about to find out.” The Globe and Mail, 5 June 2004. Accessed July 1st, 2021.
Markram, Henry and Kamila Markram. “Interview: Henry And Kamila Markram About The Intense World Theory For Autism.” Interviewed by John Scott Holman. Wrong Planet, 6 Jan. 2021. Accessed July 1st, 2021.
Mulholland, Angela. “Down syndrome families worry about new prenatal tests.” CTV News, 12 March 2011. Accessed July 1st, 2021.
Rea, Shilo. “Training by Repetition Actually Prevents Learning for Those With Autism.” Carnegie Mellon University, 5 Oct. 2015. Accessed July 1st, 2021.
Sparrow, Max. “ABA.” Unstrange Mind, 20 Oct. 2016. Accessed July 1st, 2021.
Sparrow, Max. “The ABCs of Autism Acceptance.” Autonomous Press, 2016.
Stout, A. “Be Careful — Some ABA Therapy Situations Can Become Traumatic or Abusive.” The Autism Site. Accessed July 1st, 2021.
Tibbetts, Janice. “Parents fight to make health care Charter right.” The National Post, 10 June 2004. Accessed July 1st, 2021.
“Top court: B.C. doesn’t have to fund autism treatment.” CBC, 19 Nov. 2004. Accessed July 1st, 2021.
“Understanding Disability Models.” Identity-First. Accessed July 1st, 2021.
Walker, Nick. “Autism and the Pathology Paradigm.” Neurocosmopolitanism: Dr. Nick Walker’s Notes on Autism, Neuroqueering, & Self-Liberation, 23 June 2016. Accessed July 1st, 2021.
Walker, Nick. “Neurodiversity: Some Basic Terms & Definitions.” Neurocosmopolitanism: Dr. Nick Walker’s Notes on Autism, Neuroqueering, & Self-Liberation, 27 Sept. 2014. Accessed July 1st, 2021.
“Why I Left ABA.” Socially Anxious Advocate, 22 May 2015. Accessed July 1st, 2021.
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