Neurodiversity Library

Steve Silberman discusses several of these in this interview at Five Books.

Follow the #ActuallyAutistic hashtag for perspective from actually autistic people. Note that identity-first language is generally preferred in this community.

CHAMPS and the Compliance Classroom

My stomach dropped when I saw CHAMPS at our elementary school. "Eyes front, knees front, closed mouth" leapt off the wall and rose from memory. I was in school in the 70s and 80s. Some teachers were really into table readiness and proper student posture, and some principals thought a paddle made them persuasive. Compliance was the soul of their pedagogy. Those are not fond memories. I was an undiagnosed autistic in a culture without the vocabulary to understand me or help me understand myself. But I understood authoritarians well enough. They are a straightforward grok.

I handled the thoughtless compliance better than many of my peers. I could disappear into myself and hide in almost still silence. The tugging of my hair betrayed my perpetual anxiety and my yearning to scratch my scalp. In the head beneath the scalp I wanted to scratch and the hair I wanted to pull, a young mind churned: Scratching is not conforming; I must not break the envelope and compromise table readiness; that will rouse them. Hide in compliance. Don't talk; don't move; align your body on the auditor at the front of the room. The safe places are your head, books, and libraries. The books are waiting on the other side of compliance.

I sometimes close my eyes to better parse the speech coming at me. I swim in sensory overwhelm. I must pick a firehose. Eyes front preserves the illusion of compliance, so I'll stop listening. I'm not interested anyway. The books are so much more. The books are waiting. The written word is where my soul abides. This place in which I layover is just where my body resides – an eyes front, knees front, raise your hand to piss layover that I secretly indict. I tell no one.

Within the constant overwhelm is a pilot flame of anxiety, burning always. Anxiety and overwhelm, the torrid pas de deux that belies the silent, almost still compliance. Their dance is steam and froth, resonance foam on the sensory ocean I swim beneath the almost stillness – still but for the tugging of my hair. Don't disallow me that, but some of them will. Fidgeting is a threat.

The memories subside, and I'm again staring at a wall in my son's school where the words "eyes front, knees front, closed mouth" hover over the teacher's pulpit. Through 30 odd years those words time travelled. The pedagogy is the same. Compliance still reigns. What we seek to depose with the voice, choice, and agency of project-based learning asserts its durable status quo. It enjoys a sinecure in its pickled culture. Oblivious to neurodiversity, oblivious to the software-eaten world coming for it, it endures in the false safety of trying nothing new. Safety for them, for now, but not for the neurodivergent they still don't understand.

Books that influenced my views on education and project-based learning

Project-based Learning and School Culture

Change the culture and user experience of schools. Culture doesn’t come from a box. It’s not proprietary and rented from a corporation. Culture doesn’t have someone else’s trademark on it. Culture must be made from within with grassroots involvement.

Create a culture of neurodiverse teams of project-based learners using technology and design thinking to communicate, collaborate, iterate, and launch to authentic audiences of fellow humans. Tech won’t find its place in education until project-based inclusion replaces the lecture and deficit models.

Agile teams, distributed collaboration, and the hacker ethos of flexible improvisation and rapid iteration are powerful artifacts of the disruptive rise of software. They are life and industry changing. When informed with neurodiversity and the social model of disability in an open by default culture, they are a future for education and work where we collaborate and iterate our way through massive software-driven change. We will navigate disruption with compassion, finding opportunity and inspiration in the diversity of our shared humanity. We are humans making things for and with other humans, helping each other cope with sentience and senescence on our pale blue dot. Communicate, collaborate, iterate, launch. With these tools we’ll make it through.

There is thoughtlessness all around us, in all human systems. In this thoughtlessness is opportunity. Engage project-based learners in designing for real life. Start by designing a shared, grassroots culture together with students.

Culture can be the foundation for all future innovation, or it can be the single biggest resistance to innovation. Don’t fuck up culture.

A great fallacy born from the failure to study culture is the assumption that you can take a practice from one culture and simply jam it into another and expect similar results. Much of what bad managers do is assume their job is simply to find new things to jam and new places to jam them into, without ever believing they need to understand how the system—the system of people known as culture—works.

Source: Why Culture Always Wins

Culture always wins over tools and technologies, but most of the business world is tone deaf to understanding culture.

Source: FAQ about The Year Without Pants (with satisfying answers)

Education, Neurodiversity, the Social Model of Disability, and Real Life

Great minds don’t always think alike.

To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.

Inform the voice and choice of project-based learning with neurodiversity and the social model of disability. Create a future of education and work where neurodiverse teams of project-based learners use technology and design thinking to communicate, collaborate, iterate, and launch to authentic audiences of fellow humans.

Together, we will iterate our way through massive software-driven change. We will navigate disruption with compassion, finding opportunity and inspiration in the diversity of our shared humanity. We are humans making things for and with other humans, helping each other cope with sentience and senescence on our pale blue dot. Communicate, collaborate, iterate, launch. With these tools we’ll make it through.

To that end, the quotes below provide a brief primer on neurodiversity, the social model of disability, and design for real life.

Neurodiversity

Neurodiversity is the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.

The neurodiversity paradigm is a specific perspective on neurodiversity – a perspective or approach that boils down to these fundamental principles:

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.

Source: Neurodiversity: Some Basic Terms & Definitions, http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/


“Great minds don’t always think alike.” We already understand the value of biodiversity in a rainforest. The presence of a wide variety of life forms – each with its own distinctive strengths and attributes – increases the robustness and resilience of any living community as a whole, and its ability to adapt to novel conditions. The same is true of any community of human minds, including workplaces, corporations, classrooms and society as a whole. To face the challenges of the future, we’ll need the problem-solving abilities of different types of minds working together.

The word “neurodiversity” was coined in the 1990s by an Australian sociology grad student named Judy Singer after reading a book about the social model of disability, which proposes that disability is a product of the way society is organised, rather than by limitations imposed by a person’s condition. In a world without wheelchair ramps and accessible buildings, wheelchair users have very few choices about where they can go. But in a world that accommodates wheelchair users, they have many more choices. Neurodiversity extends the social model of disability into the realm of cognitive differences like autism, dyslexia, and ADHD. How can we make the world safer and more welcoming to people with these conditions so they can lead happier, healthier, and more autonomous lives? That’s the question that the neurodiversity movement asks.

Source: Steve Silberman recommends the best books on Autism, http://fivebooks.com/interview/steve-silberman-on-autism/


Neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.

Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?

The idea of neurodiversity has inspired the creation of a rapidly growing civil rights movement based on the simple idea that the most astute interpreters of autistic behavior are autistic people themselves rather than their parents or doctors.

It seems that for success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways.

The revenge of the nerds was taking shape as a society in which anyone who had access to a computer and a modem could feel less disabled by the limitations of space and time.

The kids formerly ridiculed as nerds and brainiacs have grown up to become the architects of our future.

If you meet one person with autism, you’ve met one person with autism.

Source: NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, http://stevesilberman.com/book/neurotribes/


For more on neurodiversity:

https://refind.com/rboren/topics/neurodiversity

Social Model of Disability

The social model of disability is a reaction to the dominant medical model of disability which in itself is a functional analysis of the body as machine to be fixed in order to conform with normative values. The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences.

Source: Wikipedia: Social Model of Disability, https://en.m.wikipedia.org/wiki/Social_model_of_disability


The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.

Source: The social model of disability, http://www.scope.org.uk/about-us/our-brand/social-model-of-disability


They didn’t actually speak to his own limitations. They spoke instead to the thoughtlessness all around him. As he began to see it, disability wasn’t a limitation of his, but rather a mismatch between his own abilities and the world around him. Disability was a design problem.

One day someone will write a history of the Internet, in which that great series of tubes will emerge as one long chain of inventions not just geared to helping people connect in more ways, but rather, to help more and more types of people communicate just as nimbly as anyone else. But for the story here, the most crucial piece in the puzzle is this: Disability is an engine of innovation simply because no matter what their limitations, humans have such a relentless drive to communicate that they’ll invent new ways to do so, in spite of everything.

You could describe this in that old cliche that necessity breeds invention. But a more accurate interpretation is that in empathizing with others, we create things that we might never have created ourselves. We see past the specifics of what we know, to experiences that might actually be universal. So it’s all the more puzzling that design, as a discipline, has so often tended to focus on a mythical idea of the average consumer.

Source: Microsoft’s Radical Bet On A New Type Of Design Thinking: By studying underserved communities, the tech giant hopes to improve the user experience for everyone., https://www.fastcodesign.com/3054927/the-big-idea/microsofts-inspiring-bet-on-a-radical-new-type-of-design-thinking


For more on the social model of disability:

https://refind.com/rboren/topics/social-model-of-disability

https://refind.com/rboren/topics/disability

Stimming and Quiet Hands

“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.

They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”

I know.

I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.

Source: Quiet Hands, https://juststimming.wordpress.com/2011/10/05/quiet-hands/


I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.

When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.

So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.

Source: On Stimming and why “quiet hands”ing an Autistic person is wrong, https://thecaffeinatedautistic.wordpress.com/2013/02/10/on-stimming-and-why-quiet-handsing-an-autistic-person-is-wrong/


For more on stimming:

https://refind.com/rboren/topics/stimming

Advice to Teachers of Autistic Kids

  • Be patient. Autistic children are just as sensitive to frustration and disappointment in those around them as non-autistic children, and just like other children, if that frustration and disappointment is coming from caregivers, it’s soul-crushing.
  • Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.
  • Meet them at their level. Try to adapt to the issues they’re struggling with, as well as their strengths and special interests. When possible, avoid a one-size-fits all approach to curriculum and activities.
  • Treat challenges as opportunities. Each issue — whether it’s related to impulse control, a learning challenge, or a problem behavior — represents an opportunity for growth and accomplishment. Moreover, when you overcome one issue, you’re building infrastructure to overcome others.
  • Communicate, communicate, communicate. For many parents, school can be a black box. Send home quick notes about the day’s events. Ask to hear what’s happening at home. Establish communication with people outside the classroom, including at-home therapists, grandparents, babysitters, etc. Encourage parents to come in to observe the classroom. In short, create a continuous feedback loop so all members of the caregiver team are sharing ideas and insights, and reinforcing tactics and strategies.
  • Seek inclusion. This one’s a two-way street: not only do autistic children benefit from exposure to their non-autistic peers, those peers will get an invaluable life lesson in acceptance and neurodiversity. The point is to expose our kids to the world, and to expose the world to our kids.
  • Embrace the obsession. Look for ways to turn an otherwise obsessive interest into a bridge mechanism, a way to connect with your students. Rather than constantly trying to redirect, find ways to incorporate and generalize interests into classroom activities and lessons.
  • Create a calm oasis. Anxiety, sensory overload and focus issues affect many kids (and adults!), but are particularly pronounced in autistic children. By looking for ways to reduce noise, visual clutter and other distracting stimuli, your kids will be less anxious and better able to focus.
  • Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.
  • Encourage play and creativity. Autistic children benefit from imaginative play and creative exercises just like their non-autistic peers, misconceptions aside. I shudder when I think about the schools who focus only on deficits and trying to “fix” our kids without letting them have the fun they so richly deserve. Imaginative play is a social skill, and the kids love it.

Source: A parent’s advice to a teacher of autistic kids, http://blog.ed.ted.com/2016/04/30/a-parents-advice-to-a-teacher-of-autistic-kids/

Design for Real Life

Real life is complicated. It’s full of joy and excitement, sure, but also stress, anxiety, fear, shame, and crisis. We might experience harassment or abuse, lose a loved one, become chronically ill, get into an accident, have a financial emergency, or simply be vulnerable for not fitting into society’s expectations.

None of these circumstances is ideal, but all of them are part of life—and, odds are, your site or product has plenty of users in these moments, whether you’ve ever thought about them or not.

Our industry tends to call these edge cases—things that affect an insignificant number of users. But the term itself is telling, as information designer and programmer Evan Hensleigh puts it: “Edge cases define the boundaries of who and what you care about” (http://bkaprt.com/dfrl/00-01/). They demarcate the border between the people you’re willing to help and the ones you’re comfortable marginalizing.

That’s why we’ve chosen to look at these not as edge cases, but as stress cases: the moments that put our design and content choices to the test of real life.

It’s a test we haven’t passed yet. When faced with users in distress or crisis, too many of the experiences we build fall apart in ways large and small.

Instead of treating stress situations as fringe concerns, it’s time we move them to the center of our conversations—to start with our most vulnerable, distracted, and stressed-out users, and then work our way outward. The reasoning is simple: when we make things for people at their worst, they’ll work that much better when people are at their best.

Communicate context and intent:

  • Be intentional
  • Be transparent
  • Be precise
  • When it matters most

Source: Design for Real Life, https://abookapart.com/products/design-for-real-life


For more on Design for Real Life:

Rules of Thumb for Human Systems

  • projects > lectures
  • agency > compliance
  • inclusive model > deficit model
  • social model > medical model
  • rights model > needs model
  • acceptance > awareness

Use of Force, Disability, and Transparency

Screen Shot 2016-08-04 at 11.43.26 AM

Here’s a short letter on use of force, disability, and transparency I sent to my representatives:

To those in Dripping Springs, Hays County, and Texas state government,

In response to a public information request for use of force policies, the Hays County Sheriff’s Office provided only eight pages of policy. The policy does not address deescalation, chokeholds, duty to intervene, warn before shooting, moving vehicles, transparency, or reporting. For more, I discuss what little there is of the policy here:

FOIA use of force policy and then ask these questions

I share this to bring awareness and to urge policy agendas of transparency and accountability in policing.

Local policy agenda:

https://static1.squarespace.com/static/55ad38b1e4b0185f0285195f/t/55dce731e4b07137c6a819b9/1440540465863/CampaignZERO+Local+Policy+Agenda.pdf

State policy agenda:

https://static1.squarespace.com/static/55ad38b1e4b0185f0285195f/t/55dce7b3e4b0b9d287069df9/1440540595819/Campaign+ZERO+State+Policy+Agenda.pdf

As a neurodivergent parent of neurodivergent kids, use of force is of particular interest to me and my family. Police use of force and school-to-prison pipelines disproportionately impact those with disabilities. Use of force policy should be available online to all and should address neurodiversity, mental illness, disability, and deescalation. Use of force is a social contract to be discussed openly.

Help bring transparency and end compliance culture. We are responsible for humanizing the systems we inhabit. Encourage and require transparency from Texas law enforcement agencies. Dallas PD serves as a role model. They’ve taken positive steps toward transparency.

This is not all on police. They need support to handle the big issues of disability, neurodiversity, and mental illness. They need resources, training, and the assistance of other institutions and social structures. They should not have to fill the massive lack of services for our most vulnerable citizens.

With open data and open government, we can work on these issues together. Default to open. Sunlight heals.

Regards,

Ryan Boren
https://ryan.boren.me/
https://twitter.com/rboren
Dripping Springs, TX