Anxiety, Ambiguity, and Autistic Perception

This piece on interviewing autistics had me nodding along in self-recognition. It me.

I relate deeply to every point in the article, but this one acknowledges a fundamental aspect of my being that contributes to all other points:

While the autistic individual is interviewing, they will often be acutely self-aware and preoccupied by their own nervousness and internal coaching, and be simultaneously experiencing two conversations at once—one that is shared aloud between the interviewer and interviewee, and one that is an ongoing internal dialogue. Often the internal voice will overshadow the external conversation and, as a result, gaps of time in the interview will be lost. What might appear as being not being present or distracted, is typically the individual attempting to balance the internal voice with the external conversation.

Source: 533: Interviewing Autistic Individuals – Everyday Asperger’s

That ever-present internal voice is of an ever-present witness, a not-so-fair “fair witness” that audits every moment and thought, flipping through lenses and spinning self-critical narratives in real time.

Candidates on the spectrum will sometimes panic with open-ended questions, as most are very quick thinkers, able to connect information at rapid speed and reach multiple conclusions in a matter of seconds. While deliberating over a question, the candidate is also contemplating about what the interviewer expects, wants, and is hinting at. The more specific and direct a question, the better.

Source: 533: Interviewing Autistic Individuals – Everyday Asperger’s

The “reach multiple conclusions” part is significant. My mind is an ambiguity finder. I sometimes wish I could turn down or turn off my ambiguity sensitivity. When you see many interpretations and conclusions, social interactions are harder. Interviews are harder. Standardized tests—loaded with bias and assumption and often purposefully bereft of context—are harder. What others comfortably and even thoughtlessly assume, I analyze obsessively, dowsing intention and expectation.

Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

“The direct perception of the forming of experience.” There’s that internal voice, that witness. I am heavily instrumented code with breakpoints on every instruction. I’m plugged into my own JTAG witnessing myself experience experience. I’m prone to recursions and loops unwound only by passing out from adrenal exhaustion.

Such an operating system finds ambiguity everywhere. We humans communicate in assumptions, tropes, and defaults, in bundles of scripts, habits, and expectations. What usually goes unacknowledged is that these “literacies are plural and context-dependent.” I suspect many autistic people intuit this on some level because we navigate a world not set up for us, one that assumes sociality and sensory processing not our own.

In The Souls of Black Folk, W.E.B. Du Bois says that blacks have a sort of doubleness in them not found among whites. Blacks cannot just “be themselves,” but must always think about how they are being perceived by whites. This creates a sense that you are always of two minds: that you are not only thinking and doing, but that you are thinking about how others perceive you, and adjust accordingly. Whites never have to deal with this. Being the majority and having the majority power, they can just be themselves without worry about how anybody is thinking about them.

Du Bois would probably not be surprised if he learned that other minorities were put in similar situations in the U.S., but it probably didn’t occur to him that there were people out there with different kinds of minds, and that they too would develop such a doubleness.

I know all about this double-mindedness, because I experience it constantly. I not only have to think about what I’m going to say or do, but I have to think about how others might take it. I can either just say or do whatever I want as I want and hope that I don’t do something that will set people off, or I can always consciously think about everything I say or do before I say or do it, testing against what I expect the expectations are (and hoping I’m getting those right). If it takes me a moment to respond to something, it’s because I’m going through all this nonsense to make sure I don’t say or do something wrong.

Source: On the Double-Mindedness Developed Among the Different – An Intense World

The profusion of expectations and ambiguities that others sail over on a buoy of assumption overwhelms me. Whereas they accept them unconsciously, I do something akin to a real-time, zero-based audit of the assumptions coming at me: interrogating them against context and the people present, sussing intention and expectation, looking for the landmines and sinkholes, the ethnocentricities and neurotypicalisms. What look like detached “gaps of time” (as in the interview example) are very busy and very connected with moment and context.

We’re surrounded by ambiguity in everyday life. Words not only have multiple meanings, but the context in which we use words can greatly change their meaning. Even words that both sound the same and are spelled the same way can be understood very differently depending upon context.” Ambiguity is a generative, creative, and productive continuum ranging from the quiet assumptions of the quotidian to Poe’s law. The continuum is rife with dead metaphors rapidly accumulating with the exponential growth of networks. What are the assumptions of the person talking to me? What are their “normal” and their “common sense”? What memes flash through their minds when consulting their personal heuristics? What is their lived experience, and what are their triggers? What, for example, is the worldview of this white, male, abled, neurotypical, cisgender, heterosexual interviewer who knows little of marginalized experience and accepts the defaults of a life lived at the lowest difficulty setting? The ambiguities and assumptions sluicing off his words weight the moment with an anxious, gravid humidity.

The hardest part to navigate is not so much the teeming ambiguity; it’s the assumption. It’s the self-centering, automatic and unaware, that reduces ambiguity to an ethnocentric “right answer” or “right behavior” and leaves little room for autistic sociality. Instead of “foregrounding complexity as the baseline”, we bury it with myths of normality that create structural barriers and exclude people. We pathologize and marginalize the minds and bodies that sense ambiguity and assumption the most deeply and feel their results the most acutely. So much is lost in the reduction. Acknowledging ambiguity, multiple literacies, and multiple socialities renders the terrain more passable rather than less. “Ambiguity is actually something to be embraced rather than to be avoided”. It is “an inevitable feature of human discourse”. Compassionately accepting our ambiguities and differing literacies means less masking and passing and burning out—and better communication.

Overcoming mutual incomprehension and better understanding each other requires unpacking a lot of ambiguity and assumption. Bridging the double empathy gap takes work, starting with recognition that ”empathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.” Reflecting on my own experiences and those of others in the #ActuallyAutistic community—particularly with regard to empathy—I posit that the autistic tendency for rabbitholing and getting expository while in conversation is, in part, an urge to unpack ambiguity, acknowledge assumption, cross the empathy gap, and be understood.

Often times, the autistic job candidate will want to be seen, heard and understood; as is such, it is commonplace for an jobseeker to provide information that the interviewer many not deem appropriate, necessary, or beneficial. Most autistics will in fact share thoughts and insights to their own detriment, unable to stop the need to be transparent and forthcoming.

Source: 533: Interviewing Autistic Individuals – Everyday Asperger’s

Interviewing Autistic Individuals describes me. I identify with every point. I’ll conclude this with a few more to which I particularly relate. Anxiety and ambiguity, these go to 11.

Partaking in an interview can cause extreme stress for days before the interview. The interview process will more likely than not be over-thought and imagined repeatedly, with multiple outcomes and scenarios. The candidate on the spectrum will typically relive the actual interview itself, repeatedly after the event.

What might appear as a simple ‘not a fit’ or ‘no thank you,’ to the hiring agent, can be devastatingly crushing to a person with autism. It’s common to obsess over the reasons for failure and to catastrophize the outcome, incorporating all-or-nothing thinking, and self-torture, in the form of repetitive, obsessive thoughts regarding the ‘whys’ and ‘what ifs.’

Before an interview, some candidates on the spectrum will create scenarios in their mind of failure and miscommunication, and have fear of not being able to express their true intentions and true self. They often have a fear of not appearing genuine and honest enough.

Some autistics will have little to no trouble expressing self in various communication venues. But the large majority will have specific triggers to communication that can bring on various outcomes, including panic attacks, insomnia, inconsolable anxiety, and nonstop, rapid thinking.

In most cases, people on the spectrum communicate better in written form with time to process, rethink, and edit thoughts and ideas, than spoken form. When possible, some type of written assessment ought to be utilized during recruitment screening, such as an essay or instant messaging service.

Disparities in Discipline at Your School

Samuel Sinyangwe has a Twitter thread on how to use the US Dept. of Education data on racial disparities to research discrimination against marginalized groups at your school.

Search for your district on this page, and then follow the link to its discipline report.

Here’s my school district, Dripping Springs ISD, and its discipline report.

 

Discipline Report
Screenshot of the first page of the discipline report for DSISD showing pie charts for enrollment, in-school suspensions, out-of-school suspensions, and expulsions broken down by race/ethnicity.

Black students are 0.7% of enrollment and account for 2.1% of in-school suspensions, 7.1% of out-of-school suspensions, 0% of expulsions, and 2.7% of referrals to law enforcement.

Hispanic students are 20.1% of enrollment and account for 28.1% of in-school suspensions, 21.4% of out-of-school suspensions, 50% of expulsions, and 34.2% of referrals to law enforcement.

IDEA students are 9.7% of enrollment and account for 36.5% of in-school suspensions, 42.9% of out-of-school suspensions, 50% of expulsions, and 31.5% of referrals to law enforcement.

Those IDEA rates are depressingly typical. Schools over-discipline disabled children. There is a discipline gap that’s both racist and ableist. Between compliance culture, deficit ideology, and classrooms hostile to neurodiversity, neurodivergent and disabled students face systems designed for burnout and exclusion.

Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life

As our family navigates the medical and deficit models, we live this:

Disabled and neurodivergent people are always edge cases, and edge cases are stress cases. The logistics of disability and difference in a structurally ableist and inaccessible world are exhausting, often impossible. We are perpetual hackers, mappers, and testers of our systems by necessity of survival.

People with disabilities are the original life hackers because our motivation is so high. If we don’t hack we often go without.

Source: Liz Jackson: Designing for Inclusivity – 99U

A necessary part of design is compassion, and necessary parts of compassion are acknowledging the structural realities of marginalized people and rejecting narratives of resentment. “Compassion is not coddling.Compassion is practical and effective restorative magic. Compassion humanizes flow and improves outcomes.

The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a place of kindness and understanding, rather than a place of judgment. It’s to tell the truth in such a way that you’re allowing others to tell their truths, too.

Source: Design for Real Life

Our designs, our societies, and the boundaries of our compassion are tested at the edges, where the truths told are of bias, inequality, injustice, and thoughtlessness. The insights of intersectionality, the social model of disability, and design for real life help us design and build for these truths:

No one knows best the motion of the ocean than the fish that must fight the current to swim upstream.” “By focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best.” “When we build things – we must think of the things our life doesn’t necessitate. Because someones life does.” “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.” “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.

There is no path to inclusive design that does not involve direct confrontation with injustice. “If a direct confrontation of injustice is missing from our strategies or initiatives or movements, that means we are recreating the conditions we’re pretending to want to destroy.Structural ideology—an ideology shared by intersectionality, the social mode of disability, and design for real life–is necessary to good design.

With this in mind, my purpose is to argue that when it comes to issues surrounding poverty and economic justice the preparation of teachers must be first and foremost an ideological endeavour, focused on adjusting fundamental understandings not only about educational outcome disparities but also about poverty itself. I will argue that it is only through the cultivation of what I call a structural ideology of poverty and economic justice that teachers become equity literate (Gorski 2013), capable of imagining the sorts of solutions that pose a genuine threat to the existence of class inequity in their classrooms and schools.

Source: Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education

Equity literate makers are better makers. We live and make in the context of structural racism, sexism, ableism, and childism. All of us making for and with other people would serve our clients, customers, users, students, coworkers, constituents, and communities better with some equity literacy.

The big three in my toolbox for developing equity literacy and better understanding human systems are:

  • Intersectionality
  • Design for Real Life
  • Social Model of Disability

As a late-Dx autistic parent with autistic and ADHD kids, discovering these was a critical part of our journey. With them, we are better self-advocates and allies. I’ll quote from a selection of favorite sources by way of introduction.

Intersectionality

Intersectionality’s raison dêtre is to reveal the systems that organize our society. Intersectionality’s brilliance is that its fundamental contribution to how we view the world seems so common-sense once you have heard it: by focusing on the parts of the system that are most complex and where the people living it are the most vulnerable we understand the system best.

Source: The Intersectional Presidency – Tressie McMillan Cottom – Medium

In the black feminist tradition, examining the points of various structural processes where they most numerously manifest is a way to isolate the form and function of those processes in ways that can be obscured when we study them up the privilege hierarchy (Hill Collins 2000). Essentially, no one knows best the motion of the ocean than the fish that must fight the current to swim upstream. I study fish that swim upstream.

Millions of people use social media to navigate identities too complex for single analytical frames like race, class, gender and sexuality to fully capture. We are messy and complicated and we seem to want our digital tools to reflect that. But, intersectionality was never intended to only describe lived experiences. Intersectionality was to be an account of power as much as it was an account of identities (Crenshaw 1991). Here, the potential of intersectionality to understand the reproduction of unequal power relations have not yet been fully realized.

In brief, intersectionality is one of those rare social theories to combine precision of theoretical mechanisms with broadness of method (Lykke 2011). That combination has served intersectionality’s diffusion through social sciences and humanities quite well.

Source: Black Cyberfeminism: Intersectionality, Institutions and Digital Sociology by Tressie McMillan Cottom :: SSRN

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.

Source: Design for Real Life

The products we create can make someone’s day-or leave them feeling alienated, marginalized, hurt, or angry. It’s all depends on whether we design for real life: for people with complex emotions, stressed-out scenarios, or simply identities that are different from our own.

Source: Sara Wachter-Boettcher – Design for Real Life (video)

Technology companies call these people edge cases, because they live at the margins. They are, by definition, the marginalized.

Source: Design’s Lost Generation – Mike Monteiro – Medium

“Edge case” is, to be frank, a phrase that should be banned from all developer conversations (and then tattooed onto the forehead of anyone who continues to use it).

When we say “Edge Case” we mean “Stress Case”. In their book, Design for Real Life, Eric Meyer & Sara Wachter-Boettcher point out that what we glibly call an “edge case” is normally an enormously stressful event for a user.

It often accompanies high emotions, stress, physical problems, financial problems, etc. When we discount and dismiss the “edge case”, we’re actually saying “I don’t care about that particular user’s stressful situation”.

Source: Dear Developer, The Web Isn’t About You | sonniesedge.co.uk

When we build things – we must think of the things our life doesn’t necessitate. Because someones life does.

Imagine the frustration of people who use things designed by people who don’t take their basic needs into consideration. I think it is dehumanizing.

When I sit down to design things I try to put on the veil of ignorance. I imagine a world where I am not who I am right now. And I think about all the things that could possibly frustrate me. Then I think some more.

I try to design for that reality. I don’t design for myself and my perfect eyesight, my retina screens, and my fast internet connection.

Source: The Veil of Ignorance

An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.

Source: From Hostility to Community – Teachers Going Gradeless

Social Model of Disability

“Disability is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which they live.”

A mismatched interaction between a person and their environment is a function of design. Change the environment, not the body. For people who design and develop technology, every choice we make either raises or lowers these barriers.

Source: Kat Holmes: Who Gets To Play?

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

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

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.

Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

Source: World Health Organization on Disabilities

The history of autism makes clear that the notion that there is one best way to learn, one best way to experience the world, and one best way to be human, is bunk.

Think about it: why would the community of human minds be less diverse than, say, a rainforest? But it isn’t. We’re part of the natural world, and nature thrives by experimenting, by fostering the development of many different types of individuals. In a rainforest, this wild riot of variety and difference makes communities of plants and animals more resilient in the face of changing conditions. As we face the challenges of the 21st Century – which include a rapidly changing global climate! – we will need many different types of minds working together.

Inclusion sends a crucial message to all students: If you’re born disabled or become disabled in your lifetime, society will build a place for you.

Source: A Q&A about autism with Steve Silberman, author of NeuroTribes

When your child has a disability, you start out trying to “fix it” through intensive therapy. Over time, you push back. You learn that “fighting” is not a good model for living. Instead of making the child change to fit the world, you want the world to change to fit your child-to accept your child as a full human being.

Source: Illness Isn’t a Battle · thewalrus.ca

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

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.

Source: NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

The key to my happiness occurred when I stopped trying to change my brain, and started changing the context around me.

Source: Foss, Ben (2013-08-27). The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child’s Confidence and Love of Learning (Kindle Locations 387-389). Random House Publishing Group. Kindle Edition.

Turns out that, more than anything else, Kristin had one of those square-peg personalities that didn’t quite fit her world’s round- and shrinking- holes. The human brain has evolved over many thousands of years, yet only in the last hundred, a blip on that time line, have we demanded that each and every young one sit still and pay attention for seven hours a day. Kristin couldn’t. But was that really her underlying problem?

Source: Schwarz, Alan (2016-09-06). ADHD Nation: Children, Doctors, Big Pharma, and the Making of an American Epidemic (Kindle Locations 140-143). Scribner. Kindle Edition.

Autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick; they are progressing through developmental stages as we all do. To help them, we don’t need to change them or fix them. We need to work to understand them, and then change what we do. In other words, the best way to help a person with autism change for the better is to change ourselves- our attitudes, our behavior, and the types of support we provide.

We’re all human, and these are human behaviors.

That’s the paradigm shift this book will bring: instead of classifying legitimate, functional behavior as a sign of pathology, we’ll examine it as part of a range of strategies to cope, to adapt, to communicate and deal with a world that feels overwhelming and frightening. Some of the most popular autism therapies make it their sole aim to reduce or eliminate behaviors. I’ll show how it’s better to enhance abilities, teach skills, build coping strategies, and offer supports that will help to prevent behavioral patterns of concern and naturally lead to more desirable behavior. It’s not helpful to dismiss what children do as “autistic behavior” or “aberrant behavior” or “noncompliant behavior” (a phrase used by many therapists). Instead of dismissing it, it’s better to ask: What is motivating it? What purpose does it serve? Does it actually help the person, even though it looks different?

Source: Prizant, Barry M. (2015-08-04). Uniquely Human: A Different Way of Seeing Autism. Simon & Schuster. Kindle Edition.

Through the lens of the neurodiversity paradigm, the pathology paradigm’s medicalized framing of autism and various other constellations of neurological, cognitive, and behavioral characteristics as “disorders” or “conditions” can be seen for what it is: a social construction rooted in cultural norms and social power inequalities, rather than a “scientifically objective” description of reality.

The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment.

Source: Autism and the Pathology Paradigm

But the language of disability is very different to the language of disorder. Disability requires societal support, acceptance of difference and diversity, and societal ‘reasonable adjustment’, while disorder is usually taken to require cure or treatment. These are very different frameworks.

The notion of neurodiversity is highly compatible with the civil rights plea for minorities to be accepted with respect and dignity, and not be pathologised.

Source: Editorial Perspective: Neurodiversity – a revolutionary concept for autism and psychiatry

Rather than working to create another set of public labels, the real value of the neurodiversity movement may be in helping us to recognize that we each face challenges and opportunities – and that a decent society is one in which we are each able to strive to make the best of what we are given.

Source: Mental Disorder or Neurodiversity? – The New Atlantis