The Mismeasure of Misha - The Boston Globe

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The mismeasure of Misha - The Boston Globe 6/24/23, 11:33 AM

IDEAS

The mismeasure of Misha


My son broke free from the most common therapy for autism. Why
is it used on so many kids like him?
By John Summers Updated November 28, 2022, 10:31 a.m.

The author and his son, Misha, last February. COURTESY OF AURIELLE AKERELE

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I
was standing in my living room in Cambridge with Misha, my then-8-year-old
son, and Larry, his behavior analyst. Larry was leading Misha through a session
of Applied Behavior Analysis (ABA), his treatment model.

“What do you see?” Larry asked him, displaying a card with a photo of a duck.

Misha matched the card to the correct photo among an array on the table before him.

“Good job, Misha!”

Misha grabbed a gold star and added it to his “token board.”

Six days a week, Larry tried to train Misha not only to match photos but also to brush
his teeth, pull on his socks, blow his nose, speak, read, draw, and calculate. Each
session worked backward from an objective chosen for him, aiming to eliminate
“problem” behaviors. Through trial and error, Larry searched for the “reinforcers” that
prompted Misha to perform “correct” behaviors instead. Reinforcers could be
“positive” (gold stars) or “negative” (such as withholding attention). The treatment’s
ultimate ambition was deducing a precisely measured “schedule of reinforcement”
that would enable adults to predict and control Misha’s behavior in any environment.

The apparent versatility of the ABA treatment gave me hope. The neurologist who
diagnosed Misha with autism spectrum disorder described it as a lifelong condition
with no known causes or cures. Additional diagnoses ensued, none entailing a clearer
protocol: mixed receptive-expressive language disorder, sensory processing disorder,
cerebral vision impairment, intellectual disability, chronic constipation. Molecular
sequencing revealed a pair of genetic mutations never before reported in the scientific
literature.

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I borrowed confidence in ABA from the policy consensus around its potency. None of
Misha’s doctors or teachers recommended any equivalent model, nor did our
insurance cover any. Legislatures in most states, including Massachusetts, have
responded to the rapid acceleration of autism diagnoses by mandating insurance
coverage of ABA. Early Intervention, a federally funded program serving children from
birth to 3 years, steers children diagnosed with autism into ABA programs.

The ease of access clinched my commitment to the treatment. Misha’s neurologist


practiced in Newton. His developmental pediatrician and his speech pathologist were
in Lexington and Waltham, respectively. His neuro-ophthalmologist, geneticist,
gastroenterologist, and physical therapist had their clinics at different Boston
locations. Only the ABA specialists, the behavior analysts, came to our door.

Hope, confidence, and access led me to suspend judgment, to give the treatment a fair
chance to work. As I watched Larry and Misha, however, I reflected that behavior
analysts had been breaking out work tables in our living room for six years, ever since
Misha had enrolled in Early Intervention at 22 months of age. The service plan back
then had exhorted me, a key variable in his environment, “to learn strategies as taught
by clinicians.” They trained me to become a normal parent. They instructed me how to
touch Misha, when to speak to Misha, what to feed Misha, which songs to sing to
Misha, and where to push Misha’s stroller. To him they “modeled” how to act like a
normal son, one who displayed “appropriate” behaviors. The service plan promised to
teach him to speak 10 words. A year later, he had zero. “He is very strong-willed,” the
early interveners lamented of the boy at 3.

Now Misha was 8, and his ABA treatment consumed 20 hours every week at home,
plus another 25 at school. The data showed no lasting progress in any behaviors

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targeted by the intervention. A session dedicated to “brushing teeth” comprised 16


steps, beginning with “grab toothbrush” and ending with “spit.” He remained stuck on
step two: “Turn on the faucet with free hand and rinse the toothbrush.” He employed
some modified signs and verbal approximations, and even said “meatball” once. But
he never repeated the word, no matter how many times his behavior analysts showed
him photos of meatballs. He looked distracted, irked, or plain bored by the ABA
sessions, his attention wandering from their demand to demonstrate positive powers.
Prompted to “blow your nose,” he stuck out his tongue.

The pith of his personality surfaced during his leisure time, when he sought out novel
experiences. Handed a screwdriver, he embarked on a self-appointed mission to
remove knobs from our doors and light switch plates from the walls in our apartment.
He wanted no part of a session designed to train him how to throw a ball. He preferred
to balance it on his head. A sly smile often crawled across his face, hinting at a store of
private jokes. Why this jocular boy, brimming with mirth and curiosity, failed the one
treatment prescribed to him baffled me.

Was Misha failing ABA, or was ABA failing Misha? Oddly, I couldn’t answer the
question empirically with any degree of certainty. ABA is marketed as “evidence-
based,” but no state agency collects performance data, assesses outcomes, or controls
quality. If no standards existed to place Misha’s scores in context, then maybe the
theory behind ABA could shed some light. Where, I wondered, did ABA’s scientific
principles come from?

“Skinner,” Larry replied.

“B.F. Skinner? The Harvard psychologist who trained pigeons to play Ping-Pong?”

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“Yes.”

Surprised, I opened “Applied Behavior Analysis,” the textbook used for licensing
behavior analysts. Voilà! A photograph of Skinner, with his prestigious forehead,
appeared in chapter one. A hundred pages expounded the savant’s doctrine of
“behaviorism,” which he derived from laboratory experiments on pigeons and rats in
the 1930s and 1940s. From other reading I knew this much more: Skinner’s signature
conceit, reducing behavior to systems of interlocking “reinforcers,” had ignited a
roiling controversy in the midcentury decades. But the firestorm around his work had
burned out long ago. Behaviorism was a fossil.

A twinge of sadness pierced me. Disabled kids have been herded into makeshift
classrooms, seated before surplus desks, and outfitted in yesteryear’s clothing.
Apparently, they are given the obsolete ideas, too. They are, to paraphrase an epigram
by John Maynard Keynes, slaves to a defunct psychologist.

Behaviorism coalesced as a school of thought in revolt against the traditional subject


matter and methods of psychology. The inner life of motivation and sensation, will and
judgment, thought and feeling, “lack the dimensions of physical science,” Skinner
wrote in “Science and Human Behavior” (1953), widening a trail blazed by John
Watson and Ivan Pavlov. Traditional psychologists interpreted dreams and engaged in
talk therapy. Behaviorists rejected introspection, contending that “antecedents” in the
environment wholly determined an organism’s constitution. Careful observation could
measure these environmental factors. A schedule of rewards, or, in Skinner’s parlance,
“reinforcers,” could intervene to reform the patterns for the better. Skinner never

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taught pigeons to play Ping-Pong. But he did get them to peck Ping-Pong balls in
unnatural ways, and his success in reinforcing the behavior of hungry rats suggested
the ingenuity of his technique of conditioned response.

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The psychologist B.F. Skinner. MSANDERS NTI/CC-BY-SA-4.0/WIKIMEDIA COMMONS

A disregard for life “under the skin” marked behaviorism’s aspirations to be a


predictive science. The same principle made Misha’s intervention appear so versatile.
His behavior analysts restricted themselves to observing his physical operations,
devoid of subjective or personal meaning, so that they could be measured with the
same tape, as it were. Misha trying to speak and Misha trying to blow his nose fell into
the same abstract category of “behavior.” A nonverbal boy who couldn’t give ready
evidence of his inner life could be trained by presuming he had none. How clever!
Change the environment, change the boy.

But sidestepping Misha’s sense of himself as a conscious agent diverged from my


approach as a parent. His squealing and flapping I took as a kind of song and dance,
fun rather than functional. His meltdowns I interpreted as frustration over his struggle
to discriminate among his desires. When he cheated at the card game Uno and
chortled, I caught his sense of humor and cheered his assertion of freedom. I reckoned
his outward behavior, in other words, not as a domain unto itself, to be manipulated to
conform to objectives imposed on him, but as a clue to his inner feelings, beliefs, and
thoughts. That’s common-sense parenting.

It’s also sound reasoning. “There is no such thing as ‘behavior,’ to be identified prior to
and independently of intentions, beliefs, and settings,” the philosopher Alasdair
MacIntyre once wrote in a critique of behaviorism’s mindless form of scientific
investigation. “In a serious field,” Noam Chomsky wrote, “you wouldn’t identify the
subject with the study of the data. That’s like calling physics ‘meter-readings science’
because meter readings are the data.”

Skinner boasted of his refusal to read his critics. Instead, he upped the ante,

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extrapolating results from the laboratory behavior of rats and pigeons to every aspect
of human behavior in society. Crude analogies, underlined by peremptory assertion,
marked his pronouncements. Coining the term “behavior therapy” (a.k.a. “behavior
modification”), he published a novel and a series of books that discarded the
distinction between scientific prediction and utopian prophesy. Mass doses of
behavior therapy could solve the world’s political, ethical, and religious problems, he
held. If only hidebound society shed the illusions of freedom and dignity — ghosts of
“the so-called ‘democratic philosophy’ of human behavior” — then a vanguard of his
disciples could get on with the job of redesigning the environment for salvation.

Skinner’s contempt for democracy appealed to governments beleaguered by


dissension and fiscal crisis. In the 1960s, a national movement to shutter asylums,
reformatories, and prisons coincided with mass civil disobedience. Rather than
expensive, time-consuming therapies that integrated behavior into personality,
governments funded behavior therapy for gamblers, homosexuals, alcoholics, child
molesters, juvenile delinquents, and disabled children and adults. Behavior analysts
formed their first professional associations and entered schools, families, and
communities with smartly packaged, scalable interventions. In 1969, the President’s
Committee on Mental Retardation blessed their objective as “the normalization
principle.”

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One of B.F. Skinner's experiments. Each bird pushed a single ball across a table. When a bird missed the ball, it would roll
into a trough and the opponent would be rewarded with food. BETTMANN ARCHIVES VIA GETTY/BETTMANN ARCHIVE

Twilight, alas, soon fell over behaviorism’s heyday. The animal science experiments on
which the field staked its most ambitious claims fell apart. The dawning of cognitive
science cast light on the aspect of volition intrinsic to the mind. An ethic of recognition
returned to psychology as the values of agency, choice, and diversity spread through
society.

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In a speech in Boston to the American Psychological Association a week before he


died in 1990, Skinner acknowledged that the wheel of intellectual history had turned
his behaviorism to dust. But he held fast to the renunciation that distinguished it. So
far as science is concerned, the “creative self or mind,” he said in his orotund manner,
“simply does not exist.” He compared himself to Charles Darwin and cognitive
scientists to creationists.

Not long after, state governments began investing his phantom science with near-
monopoly power over the one remaining group that society still construes as less than
human.

After flunking Early Intervention, Misha began preschool in a “substantially separate”


ABA classroom in Cambridge. Autistic students in the district nearly tripled in number
between 2010 and 2020. Given the district’s choice to use ABA exclusively for them,
segregation made pedagogic sense. The fewer independent variables in the
environment, the more the classroom resembles a laboratory. (Forty-five percent of
Massachusetts students with autism are placed in some form of “substantially
separate” setting, according to the state Department of Elementary and Secondary
Education.)

Every week in school, Misha underwent two 30-minute sessions of physical therapy;
three 30-minute sessions of speech therapy; and three 30-minute sessions of
occupational therapy. The remainder, 1,380 minutes, belonged to behavior
interventions. ABA commandeered the measurement of the lesser therapies. “By the
end of the year,” his speech pathologist predicted in his Individualized Education

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Program (IEP), “Misha will increase his communication skills by requesting 3 needed
items and identifying 5 novel targets from a 3-word description with 80 percent
accuracy as averaged across 5 consecutive sessions.”

I sat in hours-long meetings squinting at bar graphs and line charts presented by a
team as large as a hockey squad. Misha was never invited to attend. I served as his
proxy, his voice. But behaviorism’s assumptions relegated me to a spectator. No theory
of autism, philosophy of education, or conjecture of Misha’s flourishing informed his
IEP. Theory and philosophy are anathema to behaviorism. Education is engineering,
Skinner said. A student is a “vortex of stimuli” controlled by the environment. Only
that which can be measured in metric time matters. The results of quantification are
considered self-evidently true. Either Misha met his objectives or he did not.

He did not. Misha’s sister graduated from fourth, fifth, and sixth grades, bridges over
which she crossed from elementary to middle school. Misha remained in “pre-
academic” time. When he was biologically 5 years, 5 months old, he was alleged to be 1
year, 6 months old behaviorally — a stopped clock, placed in an existential penalty
box. His teachers copied and pasted the same “vision statement” into his IEP for six
consecutive years.

Misha could not speak up. But he did act out. He rose from his seat and moved around
his classrooms, orienting his body in space. “We have created a new token board for
Misha that targets ready hands and looking eyes,” read one of the “compliance
strategies” devised to rope him into his prescribed place.

At age 8, he evinced an intense curiosity about hair. He picked out hair from among
the wood chips on the playground, held single strands to his ear, and played them like
a violin, grinning with delight. At school, he began touching the heads of his teachers

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and classmates. He did so 5.25 times a day when the tabulations began. His average
rose to 74.75 times a day and then spiked to 116.45 times a day. Why? “Through the
course of multiple observations,” his behavior analyst wrote in summarizing a half-
dozen “functional analyses” undertaken in school and at home, “Misha engaged in hair
pulling across staff. He has pulled hair of peers across settings. He has pulled hair
during structured and unstructured activities. He has engaged in hair pulling when he
has been engaged in preferred and non-preferred activities. It is hypothesized that hair
pulling is a synthesis of functions, not reliably dependent on the setting, situation, or
regulation.”

Another possibility, namely that the form and feeling of hair enchanted Misha’s
budding aesthetic imagination, fell outside behaviorism’s exclusively “functional”
template of value. A behavior is either “adaptive” (correct) or “maladaptive”
(problem). It either reduces or increases tension between the organism and the
environment. About the pursuit of pleasure for its own sake, ABA had nothing to say.

The impasse exposed a conceptual bind beneath mounds of data. Misha couldn’t learn
the normal academic curriculum of math, science, history, and English until he
functioned like a normal student. His physiology wouldn’t permit him to keep his
hands and feet still, like a normal student. ABA misconceived his sensory wants and
needs as “problem behaviors” and intervened, which only generated more “problem
behaviors.” The data outputted by ABA’s fetish for measurement fed back into itself as
input, reinforcing a consensus that succeeded mainly in producing a feeling of
pointlessness.

At the Lurie Center for Autism, an educational consultant told me ABA couldn’t
possibly be the impediment. Misha just needed a better, stricter, more comprehensive

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intervention plan in a private school out of the district. Off he went, with my consent,
to Melmark New England, an ABA school 40 minutes away in Andover.

Melmark clamped a vise grip around him. In an observation room, behind a one-way
mirror, an “educational coordinator” monitored his compliance with “appropriate
social interactions” in class. Rules of maneuver screwed him into meticulous
formations of space and time. “Any instance that he comes within six inches of another
person without permission” his teacher docketed as an “invasion of space.” “Bolting”
occurred when he wandered “more than four feet away from the designated area
without permission” — to touch an elevator button in the hall, for example. To
extinguish his interest in hair, the behavior that prompted his transfer out of
Cambridge, Melmark deployed physical intervention.

Misha responded with bouts of crying and episodes of tearing hair out of his scalp and
eyebrows. I visited the observation room one day to see for myself. My eyes landed on
a copy of Skinner’s “Science and Human Behavior,” which stood among other books
and papers on the educational coordinator’s bookshelf. We watched Misha rise from
his desk and move about the classroom, slapping his hands together and stomping his
feet. “See that,” I implored. “His sensory wants and needs should be respected.” The
coordinator, paraphrasing Skinner’s book, remonstrated that Misha’s sensory wants
and needs, “if real,” constituted no useful “evidence.”

The assertion of dogma focused my concern. Twice a day, Misha’s teacher subjected
him to Melmark’s school-wide “well body checks.” A “body tracker system” stored
photographs on a central server. I objected to an adult woman inspecting my son’s

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body — sometimes in a closed bathroom stall — without his consent or my


foreknowledge. Melmark appeared surprised by my objection. The possibility that
Misha could harbor unarticulated feelings about compulsory inspections of his body
seemed not to have occurred to them. Privacy, after all, obstructs the gaze of
behaviorism. Dignity, which can’t be measured, must not exist. I gave Melmark notice
of his withdrawal and began searching for his third school in less than two years.

The author and Misha. COURTESY OF AURIELLE AKERELE

No treatment model will work for everyone, of course. For whom does ABA work? To
what degree? For how long? The absence of longitudinal data spoils our capacity to

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answer these questions with integrity. The natural changefulness of young children,
not to mention the role of chance, are unaccounted variables. Yet refuting any
treatment definitively is impossible. Parents like me need to believe something can
help our children.

So when I read in Melmark’s Family Handbook that “ABA is an objective discipline”


and “there is nothing to substantiate” complaints that “behavioral programs produce
robotic children,” I suspended my critical faculties. Queried for this essay about the
science behind ABA, Melmark pointed to “a large body of valid scientific evidence”
ascertained by fellow behavior analysts, past and present. I spent some time reading
around in that “evidence.” This time, though, I also took in the growing criticism about
it. Education scholars independent of the ABA industry find its published research
riddled with conflicts of interest, resistant to interdisciplinary cooperation, and
hampered by “rock-bottom” standards.

To my knowledge, only one large-scale outcomes analysis has been undertaken by


government. That is the US Department of Defense’s ongoing “Autism Care
Demonstration,” a multiyear assessment of claims made in the military’s insurance
program. “The Department remains very concerned,” the 2021 report concluded, as
“almost half of the participants are experiencing no change or worsening symptoms
after two years of ABA services.” The data showed no correlation between treatment
intensity and outcomes. Of the improvements that were imputed to ABA, the
Pentagon’s report questioned whether they were “clinically significant.” ABA’s own
research standards, the report said, “do not meet our hierarchy of evidence standard
for medical and proven care.”

In “The Measure of Man” (1953), the writer and naturalist Joseph Wood Krutch

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perceived that behaviorism’s midcentury power and prestige surpassed its scientific
discoveries. Behaviorism spread to the extent that individuals forfeited their
presumption of free will and became automata, “conditioned to like being
conditioned.” I think the same paradox explains ABA’s current expansion better than
the “evidence” alleged by the industry.

Over the two decades that state legislatures have endorsed ABA for children with
autism, a vanguard of behavioral technologists have been reengineering the
environment of culture for everyone. Skinner’s technique of reinforcement has shaped
the design of video games, dating apps, slot machines, social media, and product
marketing. The digital architecture of mass behavior modification, busy with prompts,
notifications, and nudges, mostly just aims to herd us into goals chosen for us.

The automation of life is plain to see in the unfolding future of ABA. Seventy ABA
classrooms in New England already use robots for autism instruction. I telephoned the
manufacturer in Connecticut to pose a question missing from the excited newspaper
stories. No, a spokesperson avowed, the company hasn’t collected any data to justify
its claims for robot-assisted ABA.

The evidence is beside the point, but the irony is rich. Trained to disregard the inner
lives of their clients, behavior analysts themselves may be replaced by robots.

Now 11 years old, Misha still doesn’t brush his teeth, blow his nose, speak, read, draw,
or calculate, at least not like most children his age. But he receives no ABA at home,
and his educational plan no longer rubs his nose in his impairments. In March, he
started at the Perkins School for the Blind, in Watertown, the only school in
Massachusetts willing to honor my demand to scrub every trace of ABA from his IEP.
Perkins manages to teach Misha without injuring his distinctive modes of building and

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fortifying his identity.

If not for a chance disruption to the environment, however, I might not have gained
the confidence to gamble on such a radical departure.

The outbreak of COVID, of all things, did the trick. Melmark closed for some months.
The behavior analysts stopped knocking on our door. Time and again I’d been warned
that halting ABA treatment could jeopardize Misha’s well-being. According to
behaviorism’s iron laws, the abrupt withdrawal of reinforcers, the collapse of
hierarchies of time and space, risked regression — or even a state of vegetation.

Misha greeted the opportunity as though bounding out of the opening of a clenched
fist. One warm day that summer, he charged down the street to the community
swimming pool with me in tow. He drew a breath, sealed his lips, and dunked himself
in the water. In swells of exuberance that lasted all afternoon, he taught himself how
to swim — and set himself free.

John Summers, former editor in chief of The Baffler, is a research fellow in history
and disability at New America.

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