Autistic Canaries

Autistic man Freestone Wilson suggested in the 1990s that autistic people are functioning as the “miners’ canaries” of civilisation. When the air in the mine is poisoned we do not prevent canaries being born in case they suffer from the poison and upset us: we clean the air or close the mine.

Source: Discussion paper on eugenics and diversity

Autists are like the canary in the coal mine of mainstream society. We are amongst the first who are affected by pathologically hyper-competitive cultures.

Source: What society can learn from autistic culture | Autistic Collaboration

…at the same time, Asperger insisted that the non-compliance of his patients, and their tendency to rebel against authority, was at the heart of what he called “autistic intelligence,” and part of the gift they had to offer society.

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

And, take my word on this, no one can identify and rebel against an unfair system as efficiently as a kid or adult with ID, except perhaps an autistic person. They know the system is unfair!

Source: PBIS is Broken: How Do We Fix It? – Why Haven’t They Done That Yet?

Heed the canaries. Include us when designing for pluralism. Design is tested at the edges.

A Triptych of Triptychs for Designing for Neurological Pluralism

ANI launched its online list, ANI-L, in 1994. Like a specialized ecological niche, ANI-L had acted as an incubator for Autistic culture, accelerating its evolution. In 1996, a computer programmer in the Netherlands named Martijn Dekker set up a list called Independent Living on the Autism Spectrum, or InLv. People with dyslexia, ADHD, dyscalculia, and a myriad of other conditions (christened “cousins” in the early days of ANI) were also welcome to join the list. InLv was another nutrient-rich tide pool that accelerated the evolution of autistic culture. The collective ethos of InLv, said writer and list member Harvey Blume in the New York Times in 1997, was “neurological pluralism.” He was the first mainstream journalist to pick up on the significance of online communities for people with neurological differences. “The impact of the Internet on autistics,” Blume predicted, “may one day be compared in magnitude to the spread of sign language among the deaf.”

Source: The neurodiversity movement: Autism is a minority group. NeuroTribes excerpt.

A triptych of triptychs for designing for neurological pluralism

The cave, campfire, and watering hole archetypal learning spaces:

The red, yellow, and green of interaction badges:

The three level communication stack of distributed collaboration:

 

Living Privately. - Building and maintaining a sense of what to show in each social environment. - Discovering and creating new environments in which we can show more of ourselves. - Assessing where you can grow new parts of yourself which aren’t (yet) for public display.

Source: On Privacy – Human Systems – Medium

We don’t need your mindset marketing.

Autistic Special Interest and ADHD Hyperfocus crush learning curves. Both are powered by passion and intrinsic motivation. Without agency to pursue passion, these rockets can’t take off.

We don’t need your mindset marketing.

We don’t need your behavior mods.

We don’t need your sticks and carrots.

We don’t need your compliance cult.

We need agency and acceptance.

Embrace the obsession. Special interests are “intimately tied to the well-being of people on the spectrum“. “Special interests have a positive impact on autistic adults and are associated with higher subjective well-being and satisfaction across specific life domains including social contact and leisure.

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.” “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Compassion and acceptance are practical and effective magic. They remedy a lot of problems and contribute to psychological safety. Acceptance matters. “A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism. ” “We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.”

Source: I’m Autistic. Here’s what I’d like you to know.

PBIS is Coercion

This is an argument usually used for Applied Behavioral Analysis (ABA), but it applies to PBIS as well. Because PBIS emphasizes the use of tangible rewards and teacher praise to motivate “appropriate” behavior, it often escapes this description.

The overall focus of PBIS is obedience or compliance with rules leading to a reward. The flip side of that coin is there is a lack of rewards or outright punishment administered for noncompliance. The pressure of complying with this system turns kids into ticking time bombs. Having to focus on compliance with school-wide and classroom rules stresses kids out and causes them to enter a state of anxiety when they come to school. In fact, I have seen this escalate to the point the school building itself was a trigger for panic attacks.

And, take my word on this, no one can identify and rebel against an unfair system as efficiently as a kid or adult with ID, except perhaps an autistic person. They know the system is unfair!

Source: PBIS is Broken: How Do We Fix It? – Why Haven’t They Done That Yet?

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.

In preparing a new Afterword for the 25th-anniversary edition of my book Punished by Rewards, I’ve sorted through scores of recent studies on these subjects. I’m struck by how research continues to find that the best predictor of excellence is intrinsic motivation (finding a task valuable in its own right) – and that this interest is reliably undermined by extrinsic motivation (doing something to get a reward). New experiments confirm that children tend to become less concerned about others once they’ve been rewarded for helping or sharing. Likewise, paying students for better grades or test scores is rarely effective – never mind that the goal is utterly misconceived.

It’s time we outgrew this limited and limiting psychological theory. That means attending less to students’ behaviors and more to the students themselves.

Source: It’s Not About Behavior – Alfie Kohn

Since reading NeuroTribes, I think of psychologically & sensory safe spaces suited to zone work as “Cavendish bubbles” and “Cavendish space”, after Henry Cavendish, the wizard of Clapham Common and discoverer of hydrogen. The privileges of nobility afforded room for his differences, allowing him the space to become “one of the first true scientists in the modern sense.”

Let’s build psychologically safe homes of opportunity without the requirement of nobility or privilege. Replace the trappings of the compliance classroom with student-created context, BYOD (Bring Your Own Device), and BYOC (Bring/Build Your Own Comfort). Let’s hit thrift stores, buy lumber, apply some hacker ethos, and turn the compliance classroom into something psychologically safe and comfortable to a team of young minds engaged in passion-based learning. Inform spaces with neurodiversity and the social model of disability so that they welcome and include all minds and bodies. Provide quiet spaces for high memory state zone work where students can escape sensory overwhelm, slip into flow states, and enjoy a maker’s schedule. Provide social spaces for collaboration and camaraderie. Create cave, campfire, and watering hole zones. Develop neurological curb cuts. Fill our classrooms with choice and comfort, instructional tolerance, continuous connectivity, and assistive technology. In other words, make space for Cavendish.

My cave, campfire, and watering hole moods map to the red, yellow, and green of interaction badges (aka color communication badges). The three-level communication flow used at my company and other distributed companies reflects the progressive sociality of cave, campfire, and watering hole contexts and red, yellow, green interaction moods. These triptych reductions are a useful starting place when designing for neurological pluralism. When we design for pluralism, we design for real life, for the actuality of humanity.

Source: Classroom UX: Bring Your Own Comfort, Bring Your Own Device, Design Your Own Context