The Maori word for Autism is “takiwatanga”, meaning “in her/his own time and space.” Autism is a collection of cognitive traits that each of us on the spectrum express differently. Some of us have strong, unique interests, others can be more or less verbal, and many might find comfort in routine. We’re naturally curious and honest, and many of us have excellent memory for details. Some have sensory differences, too, seeing the things we hear, hearing the things we see, or remembering numbers by color associations. Some of us have photographic memories. Each one of us is unique.
Autism is a spectrum disorder that affect every aspect of life for those of us who live with it. It's not a disease to be cured, rather it's a set of cognitive traits that have a lot in common with each other and bring unique perspectives and challenges to life. We're different—not broken. This article describes some of my history with autism and offers some guidance on having a happy, productive life with autism.
The Autism Self-Advocacy Network is a great place to learn how you can be a great ally to Autistic people: https://autisticadvocacy.org/.
As a child, I didn't speak until I could use complete sentences. I sat endlessly rocking back and forth, tapping things, and quietly staring off into space. I have the signature wide-set eyes, short mid-face, and wide forehead of people with Autism Spectrum Disorder. My first sentence, at the age of four, was "May I have some juice, please?", which floored my mother.
I didn't make eye contact with anyone and kept peculiar habits: sometimes banging rocks together, quietly whispering to a blade of grass, or staring blankly at an "empty" wall while listening to classical music tapes. It took the state school system numerous consecutive IQ tests before they could get a solid measurement, call me a savant, and move me into gifted classes.
By age 12, I'd built my first few computers and networks, and had written and trained my first neural networks and protocol analyzers. By the end of elementary school, I had taught myself four languages and basic calculus, because Sanskrit was so much easier than small talk.
In junior high and high school, I managed to make a few friends, and kept up with all manner of technical, language, and musical interests. By age 17, I was the youngest person ever certified to repair every piece of hardware IBM had commercially released, had learned another half dozen languages, and was proficient on four musical instruments.
It would be another decade before I went on my first date.
In university, I finally taught myself to stop rocking back and forth and tapping my leg incessantly—"stimming", as it's called in ASD parlance. I stuck around academia for the next 14 years, including 10 years of undergraduate study across fourteen different majors followed by four years of grad school. I stuck with it for so long because it was one of the few places I felt safe and understood.
Over time, I learned about the other traits of mine that are closely related to autism: synaesthesia, ADHD, Ehlers-Danlos, photographic memory, and a variant of Multiple Sclerosis. Many common genetic traits cluster strongly with autism.
These days, I still don't go to loud places unless there's a rhythm involved. I still prefer music based in repetition, variation, and evolution. Texture and modulation matter way more than melody or vocals to me. "Dancing" for me looks an awful lot like rocking back and forth. And I am still perfectly happy sitting and staring at an an "empty" wall while listening to classical music. But these days it's FLAC files, and my sound system is much nicer.
Autism effects every aspect of my daily life:
Curiosity: By and large, we don't judge anyone or give any heed to social expectations since we don't believe in "should" in a social sense. We're just endlessly curious and accepting of new information. Who people are as people and how they behave towards us is what matters—not their race, gender, age, intelligence, religion, language, salary, expectations, choice of fashion, or social status.
Honesty: Autistic people can't play or understand mind games, rarely if ever lie, and can't process or fathom hidden agendas. Within our perspective on it, truth is truth, and what we sense is what we know is what we say, for better and for worse. And we interact with others as if they're doing the same. This is the same facet that prevents us from understanding sarcasm: consistency between thought and expression is an assumption. Thought is expression. From us, compliments, comments, and criticisms are always the real deal.
Memory: We have generally incredible sensory memories. I can draw you a floor plan of any building I've ever entered and describe to you most any object I've seen or tune I've heard. I don't recall conversations word-for-word or calendars day-for-day, but there are many who can. This is a savant trait that's not always present to this degree in other people with autism. It's a spectrum—not every person has every trait.
Passion: When there is a thing we like, we like to dive very, very deep until we understand every observable facet of the thing or topic in question. While this can come across as obsessive, this passion pervades every subject of our interest. It leads to a system of very deep and rich understandings of how and why things are what they are within our view of them, and how the facets of those things relate to each other.
Presence: Since we're always processing all of the vast array of sensory information pouring into us, we're always present in the current moment. For us, there is no other option than to live in the here and now. Mindfulness comes naturally.
Simplicity: Not having social instincts does have its upsides. We don't own things, do things, or profess things simply for the sake of social status, since we generally aren't driven by or responsive to social status in any way.
Braces: Foot braces relieve a considerable amount of the pain from toe-walking, and help me more evenly distribute my weight across my feet. And for those of us with Ehlers-Danlos as well, hand braces can similarly cut down on joint pain.
Clothing: Softness and consistency matter more than most other factors when deciding what to buy and wear. Anything you can do to cut down on constant stimulation, the easier things will be. And things that cut down on decision fatigue help as well. Many times throughout my life, I've worn the same things every day for years—owning five identical pairs of pants, five identical shirts, and so forth. Get socks without seams, remove scratchy tags from clothes, and try bamboo as a fabric choice.
Downtime: Time to myself goes on my calendar first every week—around 20 total hours of no mandatory social interactions, with basically no exceptions. Generally, this happens all day on Sundays and all evening on Wednesdays. If I have to socialize on a downtime day, downtime must move somewhere else on the calendar that week. Socializing is very rewarding for me and also very taxing.
Hygiene: In order not to get overstimulated in the bathroom, I generally need to use low-flow shower heads, soft-bristle toothbrushes, and soft towels. Likewise, consistent water temperature is very important to the process of staying clean. And again, developing a routine is an absolute necessity.
Meditation: To have a reasonably functional life, I have to meditate twice a day. I can't skip it, or I will be irritable and off center all day. Meditation lasts for thirty minutes once I'm awake, and thirty minutes in the early evening. I keep a notebook to record things that I need to process, then let them go as they come to me.
Navigation: Without being able to intuitively tell my right from my left, I navigate by landmarks, cardinal directions, and uphill / downhill directions. I had to learn how to figure out north, south, east, and west based on the sun, stars, moss on trees, and landmarks. This works much like holding up my hands in an "L" shape to figure out which side is left, but is instead something I can do in my head.
Mindfulness: In general, multi-tasking is a complete non-starter. In order to do anything right, I generally must do one thing at a time: chop wood, then carry water. Some life skills such as cooking and driving a car require multi-tasking, however. The key to being able to make sense of more than one thing at once is to tie it into a rhythm or a series of loops: a pattern I can process repeatedly until a task is complete.
Quantified Self: In order to plan my life and make sense of patterns I might miss due to hyper-association, I keep detailed records of my life. This consists of a spreadsheet of my day to day activities: events, mood, diet, glasses of water, medications, social interactions, exercise, weather, and location all get logged every evening. Weekly and monthly, I review these looking for broader patterns than I might otherwise be noticing day-to-day.
Routine: Routine is critical. Whenever I encounter novelty in my environment, such as a new job or living arrangement, developing a daily routine is my top priority. Predictive contexts matter: knowing why something is done is a prerequisite to knowing how it is done. Knowing the order in which things are done matters more than having a time that those things must start or end. Towards that end, major life changes have to happen gradually, in stages, in order not to be overwhelming. For example, when moving house, I pack a few boxes per day for a few weeks weeks rather than everything over a couple of days.
Social cues: In order to be able to process social cues and facial expressions, I had to study them as if they were a language all their own, enlisting the help of "native-speaker" non-autistic friends. Enunciation, posture, stance, gait, facial micro-expressions, vocal stress and intonation all carry very important signals. Facial expression flash cards can help. Having patient friends who can offer kind corrections helps as well—those who can give contextual feedback help the most. Since we hyper-associate, knowing what cues correspond to which appropriate gestures and rituals is key. It helps to know what to do based on an appropriate read of social context, i.e. "do this when you see this person", rather than "do this when you're in this place" as I might have inaccurately observed and generalized.
Stimulus Budget: I budget sensory stimulus, since I have no choice but to process every piece of the massive amount of information I pull in moment by moment. Things that are predictable or follow patterns are what ground me. Originally, that was through stimming: rocking back and forth, tapping things on my leg, hitting my head on things, making clicking noises, or making repetitive head movements. Now, I carry earplugs and occasionally also sunglasses everywhere and use them when I need less stimulation, knowing that it's over-stimulation that leads back to rhythmic simming. I can't go to grocery stores or use mass transit without bringing earplugs. My home environment is nearly always tidy, quiet, and with only just enough light to accomplish daily tasks.
Universal Capture: I'm constantly taking in more information than I can process. To help out with this, I carry a little black notebook and pen everywhere I go. When I encounter something I want to process but can't process then and there, it goes into the notebook to process later. I use the Getting Things Done productivity methodology paired with Todoist from there on out. For people with dysgraphia, a voice recorder can serve the same purpose.
Weighted Blankets: Much like a hug machine, weighted blankets or a pile of normal blankets can provide calming deep pressure stimulation. Where hugs can be overwhelming to some due to their unpredictable sensory nature, weighted blankets can both calm me down and help me get to sleep if I'm wound up at one point or another.
Written by Danne Stayskal on 2017-04-26