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Letter to the Boston Globe on “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?”

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Home » Blog » Letter to the Boston Globe on “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?”

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?”

“Yes.”

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? 

CW: ABA, behaviorism, ableism, quiet hands

To the Boston Globe,

Thank you for publishing “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?

As an allistic parent, I am always careful about writing for, or speaking about the autistic and disabled communities. I believe that they should use their own voice and be given a safe space to express themselves. It will look different; maybe a bit odd, or a bit messy, or too emotional or not emotional enough. It will cause people to stare, to point, to whisper, to look away or to ogle.

So I am not going to write about ABA therapy that many autistic and disabled adults describe as harmful.

I am writing this because I hate when neurodivergent or disabled people are silenced, over-looked and taken advantage of. That is exactly what happens with ABA therapy. It teaches kids to quietly sit and collect “tokens” or rewards for “good behavior.” The goal is to have you to blend in, to be compliant, to not complain. It is such bullshit! In all other “underrepresented populations” we cheer when they break barriers, stand up for themselves and make some noise. We celebrate “girl power” and cheer for “equal rights” advocates; but if you are autistic then you learn to have “quiet hands” and “quiet voices.” If you express yourself as an autistic child then you are put on a behavior plan at school and have to earn your way back into an “inclusion environment.”

Pretty much everything an autistic child does, says, doesn’t do or doesn’t say is pathologised and made into a way to invent a ‘therapy’ for it.

It’s actually hell to experience.
We should stop doing this and start learning about autism.

Ann Memmott PGC

It’s totally wrong but also so very convenient for society. The quiet and compliant child becomes a quiet and compliant adult. That adult will not complain when they are prevented from driving, from working (for real wages), from saving money, and most importantly from voting.

Ever wonder why the neurodivergent and disabled population are unemployed, under-employed, abused and often incarcerated? Could it be that for years we have been teaching them to be quiet, sit down, and collect their tokens?

We start charities that promote funding for ABA, applaud VC investment in ABA therapies, and vote for governments and schools districts that pass laws/budgets mandating ABA therapies. The community at large believes we are helping.

What we as a community forget to do, is to give a platform to disabled people: the loud, the awkward and the messy ones.

We often forget to give them a seat at the table.

I am writing not only in support for this article, “The Mismeasure of Misha“, but also asking that you spotlight the neurodivergent and disabled community in this conversation. Please consider publishing some of their comments, and follow up articles that focus on their experience both inside and outside the ABA therapy rooms. The ultimate dream would be to partner with them to write those articles and exposés. People like my son and his friends. They have value, they have a voice, and they don’t want to sit down, be quiet and collect their tokens.

Abuse and silencing is a constant, pervasive theme in the lives of autistic people, and for many people it is best expressed by that old, familiar phrase from special education: quiet hands!

Loud hands means resisting. Loud Hands means speaking, however we do, anyway—and doing so in a way that can be very obviously Autistic. It means finding ways to talk and think about ourselves on our own terms.

There is room for all of us to play our part. And whatever we do, however we do it, we can do it with ‘loud hands’ and ‘loud voices,’ and loud whatever else we need, in whatever way that works for us individually or collectively. Let us be our real autistic selves, loud and proud, and show the world what we truly are.

Loud Hands: Autistic People, Speaking (p. 8, 125). Autistic Self Advocacy Network

Supporting Quotes

A motto of the self-advocacy movement is “Nothing About Us, Without Us!”. Lots of people talk about us without letting us talk. We should always be part of the conversation, and be in charge of our lives.

WELCOME TO THE AUTISTIC COMMUNITY

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.

Quiet Hands | Just Stimming…

Noncompliance is a social skill”. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” 

We’re Autistic. Here’s what we’d like you to know.

Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.

One of my favorite anecdotes from Asperger’s thesis is when he asks an autistic boy in his clinic if he believes in God. “I don’t like to say I’m not religious,” the boy replies, “I just don’t have any proof of God.” That anecdote shows an appreciation of autistic non-compliance, which Asperger and his colleagues felt was as much a part of their patients’ autism as the challenges they faced. Asperger even anticipated in the 1970s that autistic adults who “valued their freedom” would object to behaviorist training, and that has turned out to be true.

THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

It’s about rejecting pity, inspiration porn, & all other forms of ableism. It rejects the “good cripple” mythos. Cripple Punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn’t “tried everything”. Cripple Punk fights internalized ableism & fully supports those struggling with it. It respects intersections of race, culture, gender, sexual/romantic orientation, size, intersex status, mental illness/neuroatypical status, survivor status, etc. Cripple Punk does not pander to the able bodied.

what are the principles of cripple punk? Are there any rules?

But even more compelling is the testimony of young people who understand the reality of this approach better than anyone because they’ve been on the receiving end of it. It is nothing short of stunning to learn just how widely and intensely ABA is loathed by autistic adults who are able to describe their experience with it. Frankly, I’m embarrassed that, until about a year ago, I was completely unaware of all the websitesarticlesscholarly essaysblog postsFacebook pages, and Twitter groups featuring the voices of autistic men and women, all overwhelmingly critical of ABA and eloquent in describing the trauma that is its primary legacy.

How is it possible that their voices have not transformed the entire discussion? Suppose you participated in implementing a widely used strategy for dealing with homelessness, only to learn that the most outspoken critics of that intervention were homeless people. Would that not stop you in your tracks? What would it say about you if it didn’t? And yet the consistent, emphatic objections of autistic people don’t seem to trouble ABA practitioners at all. Indeed, one critical analysis of ethics in this field notes that “autistics have been excluded from all committees, panels, boards, etc., charged with developing, directing, and assessing ABA research and treatment programs.”

Alfie Kohn, Autism and Behaviorism

Such an Organism as a Pigeon

“Once we have arranged the particular type of consequence called a reinforcement,“ Skinner wrote in ”The Science of Learning and the Art of Teaching“ (1954), ”our techniques permit us to shape the behavior of an organism almost at will. It has become a routine exercise to demonstrate this in classes in elementary psychology by conditioning such an organism as a pigeon.”

…Such an organism as a pigeon.” We often speak of “lab rats” as shorthand for the animals used in scientific experiments. We use the phrase too to describe people who work in labs, who are completely absorbed in performing their tasks again and again and again. 

The Pigeons of Ed-Tech

In education and in education technology, students are also the subjects of experimentation and conditioning. But in Skinner’s framework, they are not rats; they are pigeons.

The Pigeons of Ed-Tech
Homing Pigeons in Cage

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