I’m the sort of guy who gets upset when people run stop signs and turn on red when there’s clearly a “No Turn on Red” sign. People who don’t stop rarely fail to stop… they’re not even trying. They endanger anyone who happens to be walking and has the right of way. These traffic rules exist to keep everyone safe, so I need a moment to get the flash of anger out of my system literally every time I see someone do this. I’m autistic, and have been my whole life, and knowing this about myself now allows me to manage a moment rather than having to manage the spillover of emotionally-charged overthinking all day.
I did not know for certain I was autistic until just over two years ago, in the thick of the pandemic. I was locking down at the house in the beginning of February 2020 and by April, I had largely lost my ability to converse and socialize. It was no doubt disorienting for my family but it was frightening for me. Since I was in my mid-30s, I suspected that I might be “on the spectrum” with as little as I understood about neurodivergence and what happens to the brain and the adult mind as we get older. Over the last decade, I saw several mentors a few years older than me struggle with mental health challenges and made a connection that my time would come, so I prioritized my own mental health. One of the things I threw myself into was xAPI.
Anyone who knows someone with autism probably connects that while there are some similarities in how autistic people deal with it, for everyone autism presents itself differently. Atop of it being invisible to people, especially if I’m masking (or acting in a social situation specifically to accommodate expectations), many folks think about autism as a purely mental thing, and it is in fact a whole sensory disorder. In other words, it’s not just that I’m thinking differently than you. I smell, taste, hear and feel differently, too. So little is widely known about autism and neurodivergence in general that while I am a reluctant spokesperson, I must to self-advocate for what *I* actually need to survive, let alone thrive.
Kurt Hanks, at breakfast before the second day of the very first “Up to All of Us” in 2012, told me he had a vision and it was of me in a room full of coffins, knocking on them yelling at people to “wake up” and then people got up from their coffins. This shook me as I take authentic people at their word.
Maybe Up to All of Us(‘s) were attempts for people, like me, who didn’t quite know who or what they were to seek each other out and make some sense of ourselves. We can’t always figure out how to get out of the box we’re in from inside; the retreats were ways to connect with people who could understand. Not just understand the learning or the tech or the design… but understand the other individuals there.
In 2020 I sought a professional assessment for a diagnosis, but it served as a confirmation more than anything else. I did get some insight into particular gaps that, as the assessment is modeled, clearly expressed themselves. I have particular challenges (partially due to colorblindness, another sensory disorder) on the assessment with abstract visual reasoning and fairly profound memory challenges. I learned that one’s “IQ” is actually a composite score of a lot of different tests that assess specific facets of cognition, and my scores were two-sigma past norm, meaning that even if I was trying to fake the test to get the assessment, it’d be pretty impossible for me to fake it that well.
Truth is, I didn’t need the assessment.
If you’re asking yourself if maybe you’re on the spectrum, you most probably are. This is how everyone’s journey starts as I’ve come to find out, connecting with other folks who are grappling with a diagnosis (self-dx or otherwise) of autism and figuring out what to do about it. This is me knocking on your box, from the outside telling you to wake up, get a little uncomfortable and start getting to know yourself.
What Does It Mean?
My entire life and career has been about making sense of the past in order to best prepare myself for an uncertain present and an even unclearer future.
For many people, xAPI represents a technical approach to more interesting, compelling or engaging learning experiences. I needed xAPI because when I saw how people used SCORM to document canonically what people “know” I was appalled; one could not possibly ascertain what’s of value with so little, and so imprecise, information.
I’ve worked in every conceivable role in the learning industry, and a few end-user/consumer roles, too. I need context. I need to understand the result of an action. I need things spelled out. It turns out a really reliable way to prepare data for machine learning and reliable, ethical artificial intelligence applications is to start with good quality information: data that is at every level clear, explicit and actionable. This is why outcomes matter — not just that we meet the expectations, but that we are really explicit about what those expectations are to begin with. What an outcome means, in terms of its impacts. If following a certain process is an important quality of the desired outcomes, that too has to be explicit.
If your workplace is focusing on outcomes (like OKRs — Objectives and Key Results), and our general learning discourse is also focused on outcomes, that’s because the tacit and implicit stuff is hard to see or feel, especially when we’re all abstracted from each other and from any one common physical place. The shift to outcomes is a shift that is more friendly to neurodivergent audiences, distributed environs, and “abstractions.” People, whoever they are and whatever they deal with, appreciate knowing clear expectations.
In the past I quietly assumed an inclusive lens in my writing and in my designs with respect for neurodivergent people. Going forward, when there are better practices for me to differentiate or recommend for different audiences, I’ll call attention to it. My autism colors my work; everything I’ve ever worked on, every win I might’ve had, every bad call I ever made. Like any of us, I’m making the best of what I have to work with. I’ve never been good at taking credit for the things I do well, and I’ve sometimes dwelled way too hard on things I could’ve/should’ve done differently if not just better. In the last two years, I’ve learned to give myself (and take) the space I need to heal, grow and find my voice anew. You can give yourself this space, too, if you need it, and you can ask the people you care about, who care about you, for this space.
The above isn’t my story, but it is pretty darn close to it! I spent the last two years doing a lot of internal work to come back from a third autistic burnout in a decade. In that processing, I learned to separate out echoes of different past trauma, understand the patterns of behaviors and thoughts I have related to sensory conditions. This is work I think everyone, “neurospicy” or not (thanks, Alex Hillman for that gem), can benefit from. I think several aspects of the modern learning experience would benefit being called out as helpful to folks who are (or identify with being) on the spectrum. Things that support metacognition not only do the thing of making the learning sticky… they do so by encouraging the engagement of people for whom the act of learning is something sticky in and of itself. By feeding details about how the learner did in the process of learning, you’re feeding a very common special interest: how to better the self.
I see lots in common with autistics who are less verbal, who have other cognitive or sensory challenges than mine. I see my struggles to make sense of the world, and to be understood, in autistics whose formative experiences shaped them into kinda terrible people; still I see commonality with their logic and, inherently, sympathize with a chain of traumatic experiences that likely shaped them to think and act in the way they do. When I didn’t know, or was uncertain about being autistic, I had to wrestle with some feelings of shame (or rather, a history of others shaming the condition if not autistic people). Now I have a confidence about me that I haven’t known for a while now.
A common misbelief about autistics is that we lack empathy. On the contrary, most autistics like me struggle because I (like others share with me) grapple with meeting the needs of others at the cost of meeting my own. Some of us grew up without a good sense of boundaries (turns out lots of us, actually). If there’s any misunderstanding about autistic empathy, I’d argue that neurotypical people can get fussy (sometimes downright incredulous) when empathy doesn’t appear as they anticipate it and all of us are clumsy with other people’s boundaries until we’re not.
In my last post, I wrote that I’d “do my part to make this website a place for helpful ideas around how to do precision learning.” Key to precision learning is understanding your audience and the application context for the knowledge you’re trying to impart, and the know-how you’re hoping to help them build. It’s not enough to just know the audience. To account for the biases in the design and production of a learning experience, you ought to know yourself. In the case of precision learning, much like entering into any long and meaningful relationship within a community, if you build in your unchecked biases at the start, you will never get those biases out except through extreme pain.
This is why I needed to know about myself; in what I do to model how to do learning analytics and more for y’all, I wanted to account for my own biases to not do harm. I need to trust myself so y’all can trust what I do, what we do together, as legit and real. That’s the most I can hope for from any stakeholder — keeping things legit and real. I know what I am. I know who I am. I have a strong sense of the things I need to be doing; one of those things is talking about autism in practical and useful ways for work. We’ll get there, for now I hope this post helps create the space for you to open yourself to others who think and maybe communicate differently than how you define normal or typical.