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

Opportunity but Not Pressure

I updated “Interaction Badges: Opportunity but Not Pressure” with a longer selection from “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”.

In 1995, an organization for parents of “high-functioning” children asked Sinclair to organize a series of presentations at an upcoming conference. He opened up the process to the members of ANI-L, who explored ways of making the event as a whole more accessible and comfortable for people on the spectrum. They requested that a special quiet room be set aside for people who needed to chill out or totally shut down for a while. They also devised an ingeniously low-tech solution to a complex problem. Even highly verbal autistic adults occasionally struggle with processing and producing speech, particularly in the chaotic and generally overwhelming atmosphere of a conference. By providing attendees with name-tag holders and pieces of paper that were red on one side and yellow on the other, they enabled Autistics to communicate their needs and desires without having to articulate them in the pressure of the moment. The red side facing out signified, “Nobody should try to interact with me,” while the yellow side meant, “Only people I already know should interact with me, not strangers.” (Green badges were added later to signify, “I want to interact but am having trouble initiating, so please initiate an interaction with me.”) These color-coded “interaction signal badges” turned out to be so useful that they have since been widely adopted at autistic-run events all over the world, and name-tag labels similar to Autreat (” autistic retreat”) green badges have recently been employed at conferences for Perl programmers to indicate that the wearer is open to spontaneous social approaches.

The conference began with an orientation session in the main lodge led by Sinclair, who explained the guidelines that had been established to maintain and preserve the environment as autistic space. Photographs and videos could only be taken after asking for permission, and only outdoors, so that the flash didn’t trigger seizures. Cigarette smoking and perfumes were banned. Respect for each person’s solitude and personal space was essential, and the interaction badges allowed everyone to know at a glance who was open to talking. All of the conference events were optional, including the orientation itself; the overriding principle was “opportunity but not pressure.”

Source: Silberman, Steve. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 448, 449). Penguin Publishing Group. Kindle Edition.

I updated the title of the post to include “Opportunity but Not Pressure”. I’ll elaborate on and emphasize this further in a future update, tying it into presentation culturepsychological safety, and habitable, inclusive world-building at school and work.

But in the past few years, students have started calling out in-class presentations as discriminatory to those with anxiety, demanding that teachers offer alternative options. This week, a tweet posted by a 15-year-old high-school student declaring “Stop forcing students to present in front of the class and give them a choice not to” garnered more than 130,000 retweets and nearly half a million likes. A similar sentiment tweeted in January also racked up thousands of likes and retweets. And teachers are listening.

Students who support abolishing in-class presentations argue that forcing students with anxiety to present in front of their peers is not only unfair because they are bound to underperform and receive a lower grade, but it can also cause long-term stress and harm.

Source: Some Students Want to Abolish In-Class Presentations – The Atlantic

Public speaking can indeed cause “long-term stress and harm”. See “Autistic Burnout: The Cost of Masking and Passing” and “Bring the backchannel forward. Written communication is the great social equalizer.”.

I also added a photo of and link to the communication necklaces we use in our unschool.

Two communication necklaces strung with silver chain lie on a cream colored beading mat. Each necklace has multiple cards with different faces. The necklace on the left shows a green colored card with a smiley face printed in black. The necklace on the right shows a red-colored low battery icon on a black background. The cards are held to the chains with two silver rings. Flip the cards around the rings to expose different cards.
Two communication necklaces strung with silver chain lie on a cream colored beading mat. Each necklace has multiple cards with different faces. The necklace on the left shows a green colored card with a smiley face printed in black. The necklace on the right shows a red-colored low battery icon on a black background. The cards are held to the chains with two silver rings. Flip the cards around the rings to expose different cards.

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