Posted in musings

to the end

As the narrative of the gospel of John transitions from Jesus’s ministry into his final teachings before Passover (which in turn are the build up to His suffering, death, and resurrection), there stands one of my favorite verses in the whole Bible.

“Now before the feast of the Passover, when Jesus knew that his hour had come to depart out of this world to the Father, having loved his own who were in the world, he loved them to the end.” – John 13:1

With the end of Lent in sight now that Holy Week is at hand, I’ve been thinking a lot about the ends of things. So often I start with high ambitions and good intentions on a new and brightly fascinating idea, only to peter out into nothing before I complete anything (and oh, that phrase of unknown etymology calls up some interesting analogies here: the disciple who strode out on to the water in faith, only to end by sinking in doubt; who boldly proclaimed that he would never forsake Jesus, only to deny him three times not long after). The daily grind of discipline and maintenance required to see a task through to its end, after the shine has worn off and the hardship and tedium has set in, is not something that comes naturally to me (does it to anyone, really?). But eventually, the end comes. The deadline approaches – time runs out – what is left undone must still be called up and held accountable. At some point there is no “tomorrow” left to finish up the chores, to do something special with your child, to read the last chapter of your book, or to turn your heart towards God.

What do you want to be focusing on, when the end comes? What do you want to have finished, or to at least have put your best effort into? And if it is not what comes naturally, how can you give yourself the motivation and support you need to do what you truly, deeply, desire to do?

Jesus, here, was approaching the end, and he knew it, and he was most definitely not looking forward to it. The task he was about to complete was not a pleasant one. But as the end came, he held fast to the bright and beautiful idea that had started it all: he loved his people. Having loved them from the beginning, he loved them to the end. He would prove that love, on the cross, that great and terrible end towards which he was at this point rapidly proceeding.

And what happened then? He loved them to the end – the end of his earthly ministry, the end of his very life – and then he showed them, showed us, that the end is not final: that hope and redemption and life and restoration continue on. He loved us to the end – and his love did not end. Peter sank into the waves, and it could have been the end – but Jesus pulled him up onto the boat. Peter denied his Lord and Savior, and that could have been the end too – but Jesus forgave him, redeemed him, equipped him, and built the church upon his shoulders. He caught hold of that unending love, and it pulled him past the end and into the eternity awaiting.

I know what I want to be focused on, when Lent ends, when I end: that same unending love. I know what I want to have put my best effort into: leaving behind my vices and sins, into loving the people around me and fulfilling my responsibilities to them, into making my small corner of the world more beautiful and more illuminated by the light of heaven. And since it does not come naturally, most of the time? I pray that I might strive (for righteousness) and rest (in grace) both now and at the end: Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Like Peter, I stretch my hand over the raging waters to catch hold of the ever-strong grace and the never-ending love of Jesus.

Posted in autism acceptance month, sqt

{sqt} – seven senses: sensory processing struggles and strategies

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

In autism – and a myriad of other neurological conditions – the brain struggles to interpret input accurately, either over- or under-responding to it. That then naturally leads to reactive behaviors that can cause difficulties in social interaction and everyday functioning. As this is a topic that a person could spend their whole life studying, I’m going to settle here for briefly describing each sense, a few potential symptoms of dysfunction, and one or two corresponding coping tools. Where possible, I’ll share from my own experience, both personally and with family and friends. Conveniently, there are seven senses – so I’m linking up with Kelly for seven quick takes today!

  1. Auditory: The auditory system is responsible for the recognition and interpretation of sounds. Auditory processing dysfunction is distinct from hearing loss itself, and can present as a difficulty in discrimination between similar sounds, extreme sensitivity to noise, or conversely the desire for more noise in the environment. I personally am fairly sensitive to sound – loud noises (like a crowd or a concert or a loud restaurant) make me physically tense, a day with the kids will leave my ears literally throbbing, and I struggle to focus at work without some way to eliminate the irrelevant sounds around me. For a while I was jealous of Rondel’s over-ear headphones from the church special needs ministry, but a few months ago I started using Vibes ear plugs and have found it makes a significant difference. Reducing the amount of incoming sound reduces my brain’s automatic overreaction, and thus reduces my anxiety and tension from the music at church, increases my emotional margin as a parent, and helps me work with more efficiency and focus. I can’t eat with them in, but I can have conversations without significant loss of clarity, and for the help they give me it’s definitely worth it; I highly recommend them.Ear+Plug-21
  2. Visual: As with the auditory system, visual processing is different than vision itself. For example, I have always had poor eyesight, but do not struggle with visual processing at all. People who do have visual processing dysfunction may find it difficult to keep their place while reading, distinguish between similar shapes/letters/numbers (as in dyslexia), find a specific object out of a group (like searching for Legos or puzzle pieces). Rondel has some difficulties with the visual aspects of reading, writing, and math – he reads backwards, flips or inverts letters and numbers, has trouble figuring out what word or problem comes next, and quickly shows signs of fatigue (slowing down, rubbing his eyes, etc.). After his preschool evaluation raised a red flag, we went to a optometry and vision therapy office and were prescribed a pair of magnifying glasses that help him a lot, so I’d recommend going to a professional if you suspect processing difficulties here. There are exercises that can help, but they typically require more knowledgeable guidance.
  3. Touch: The body has five different types of touch receptors: light touch, deep touch/pressure, heat, cold, and pain. Someone with tactile processing dysfunction could therefore be sensitive with regards to some of these receptors and not with others – or even by over-sensitive to some and under-responsive to others! This can manifest as very particular requirements for clothing (tight, loose, cotton, no tags, certain textures, etc.); dislike of being touched by other people; desire to stroke objects that feel certain ways; avoidance of messy play as a child; dislike of hair cuts, hair washing, and tooth brushing; engaging in potentially self-injurious behavior like scratching and head-banging; and so on. Personally, I am fairly normal with regards to heat, cold, and pain, but am very over-reactive to both light and deep touch. Something trivial that rubs me the wrong way (literally!) can bother me for hours – whether it is a hand on my shoulder at church, the grate of cutting a frozen strawberry or the pilling on an old shirt. And I am always slightly uncomfortably aware of everything I’m wearing, even my favorite and most accommodating clothes. What helps here? As far as I can tell, wearing clothes I can tolerate and choosing the most comfortable outfit possible for the situation – even when that means changing multiple times a day – helps a lot to minimize the strain. Having a fidget cube, clips, sticky tape, or some other texture to occupy my hands is also helpful – it distracts from other sensations and helps my system regulate emotionally and physically.

    fidgetcube
    The smooth ball and sharp gears are my favorite!
  4. Smell: People who are over-sensitive to smell will notice and be bothered by (or enjoy, it’s not all bad) smells that most people acclimate to or don’t notice in the first place. I have to leave the room and sometimes the house because of my husband’s personal care products – and he doesn’t even use cologne so nothing is supposed to be that scented (he doesn’t even smell his deodorant, and while he can smell the chapstick he isn’t bothered by it). There are certain people and places I struggle to enjoy being near simply because of the way they smell, because my body doesn’t adjust to it. Similarly, Rondel is very bothered by the smell of certain foods, even foods he likes to eat, and we’ve found that at those times it is helpful to light a candle (unscented or with a light scent we all enjoy) at the table to neutralize the aromas of the food.
  5. Taste: The stereotype of autistic individuals being extremely picky eaters comes from the frequency of sensory processing difficulties involving both taste and touch (the texture of food can be even more problematic than its taste for many people). Rondel and I can taste the differences between brands of the same food, sometimes disliking one while loving the other, and sometimes just needing time to incorporate the new brand into our mental repertoire. Some people, whose brains over-react to taste, might prefer bland or soft food; others might crave very hot, cold, spicy, or salty foods. For people with extreme reactions, it can be very difficult to even try new foods, since the potential physical response can be so unsettling. It doesn’t mean they are being difficult or resistant to change – they just have a very good reason to expect a new food to be an unpleasant experience. I do try to have Rondel taste new foods – but only at dinner, and only if I have reasonable cause to believe his sensory system won’t overreact to it (I’m never going to try to make him eat mashed squash at Thanksgiving, for instance). I also try to keep as many healthy and sensorily-acceptable options available as possible, so he doesn’t fall back on things like chips 🙂
  6. Proprioception: This is the body’s sense of itself and where it is in space. An individual who struggles with proprioception may run into things, hold things too tightly (potentially breaking them), kick and stomp, constantly climb on or hang from things, or play too roughly. What’s helpful here is to provide the deep touch and heavy activity that helps the brain identify the body clearly: to jump on a trampoline, to wrestle, to give bear hugs, and to lift, push, or pull heavy objects. Regulating the proprioceptive system that way can help calm someone who is anxious or upset, or can help prepare the body and brain for quiet focused activities that don’t stimulate the body enough for the dysfunctional proprioception to fully engage. In a way this is a lot like what all young children need – this is a system that takes time to develop, like the visual system, and dysfunction may not be apparent until a child is older.
  7. Vestibular: This system handles the brain’s perception and understanding of the body’s movements. So an under-responsive vestibular system will lead to cravings for wild, constant movement: spinning, swinging, fast and crazy amusement park rides, flipping upside down, and generally never holding still. Conversely, an over-responsive vestibular system may present as over-caution, a fear of heights, dislike of swings or rope ladders at the park, or a preference for sedentary activities (which can then lead to social struggles, unfortunately, as children can be mean to other children they perceive as “wimpy” or scared). Letting someone hold onto you when they are anxious about an activity that taxes their vestibular system can provide both physical and emotional support and give them a chance to experience something that would be challenging or impossible without that support (I’ve gotten to be that support several times and it is definitely a privilege) – but from what I’ve read there isn’t an easy solution here. Some things will improve with age and others may benefit from occupational therapy.

Links for additional reading:

Do you struggle with any aspects of sensory processing? What tools or techniques have been most helpful for you?

Posted in autism acceptance month

autistic inertia

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

Ever since I took physics and learned the word “inertia”, I’ve used it in an off-label manner to describe my own difficulties in beginning an activity, changing to a new activity, or stopping an activity that I’m interested in. I have a lot of inertia, I’ll say, so it’s hard for me to get started with something, especially if it isn’t something I have a lot of motivation to do (like cleaning the bathrooms!). Or: I am mentally like a very heavy ball rolling along and it can therefore be hard to stop my brain from pursuing its direction of interest (for instance, obsessive reading at the expense of all other good things like sleep). Then there is the emotional inertia: once I am angry at someone or about something, it is incredibly difficult to stop feeling that way – but once I am close to and grow to trust someone, it is equally difficult to damage my respect for and loyalty to them.

It always seemed to me that most people didn’t have quite so much trouble getting started on disagreeable-but-necessary tasks, or have to race to recalibrate to avoid panicking when plans abruptly change, or get stuck on one particular thing for quite so long. For example, no matter how far in advance I prepare for something, I am always struggling to finish it right as the deadline approaches – I just keep merrily going along in one step of the process and suddenly realize with horror I’m almost out of time to do any subsequent steps! Or I’ll set phone reminders and ask my husband to text me and think about it every day and still manage to “forget” to make a necessary phone call for weeks, because I don’t have the mental ability to initiate an activity I dislike without some type of urgent motivation (again with the dirty bathrooms…). Or I’ll find myself unable to read anything other than the one book I’m currently absorbed in, so I’ll just read it over and over and over again until the hunger for it finally abates (I read Lord of the Rings over twenty times when I was 18-20 years old, as a reference point for this. I just could not move on. And that was hardly a unique situation…)

A few years ago I tried looking up this concept online to see if anyone else had similar struggles, and to my great surprise I found that other people had noticed the same phenomenon and even given it the same name! There is something very reassuring about not being odd and not-quite-right all by oneself. From what I can tell, this inertia is related to several executive functions that can be impaired in autism, and is related to more commonly-referenced autistic behaviors such as rigidity, adherence to routine, discomfort with transitions, and perseveration. It is not due to laziness or stupidity; it’s just a result of the way the autistic brain is wired. And that is certainly a relief to hear when someone has spent years berating themselves because they’ve tried to change and couldn’t – and it also provides the accuracy of understanding necessary to design helpful solutions to the inertia problem. For example, no matter how many times I tell myself I need to get my lazy self in gear and clean the bathrooms, it isn’t going to happen and I’m going to be swamped in guilt and struggle to do anything else either – but if I tell myself something like, I’m in here anyway supervising a bath so how about I just wipe things down and see how much I can get done, I can usually get it taken care of and then have the glow of having conquered a difficult obstacle to build off of.

Anna Sullivan’s handout on inertia from Autreat 2012 is the most comprehensive description I’ve found of inertia, and takes the time to break down why it is in fact different from laziness or poor decision-making, and how it is possible for someone to not do something they actually want to do (personally, I have now or have had in the past significant challenges with four of her examples: I cannot make arbitrary choices, I used to struggle a lot with breaking a large task into smaller pieces, I cannot put myself into a desired mode of operation on demand, and I find it very difficult to move from a low-energy to a high-energy state). Reading through her list of practical tips was insightful as well – although I’ve stumbled upon a lot of those strategies myself, having them articulated objectively makes it easier to remember and practice them in the future. (If you click through to the article, note that the abbreviation AC refers to “Autistic and Cousins”, including other neurodivergent groups and individuals in the discussion).

Are you an inertial person? How does it affect your day-to-day life?

 

Posted in autism acceptance month

stims!

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

Before we began Rondel’s diagnostic process, I had never heard the words “stim” or “stimming” – so I’ll assume it’s new to a lot of you as well.

“When we feel an emotion or a collection of emotions very powerfully, stimming can help us manage these feelings without overloading. Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” – The Stimming Checklist

Essentially, a stim is a behavior that provides sensory, social, or emotional regulation to a person. Some of the most familiar (or stereotyped) stims among autistic people are hand flapping, rocking, and head banging – but to stop at those would be extremely limited and inaccurate. The Stimming Checklist has accumulated over 1400 different stims from user submissions (although some are essentially repeats as people submitted different wordings of the same behavior, there are still a lot), just to give you an idea of the diversity and range of stimming behavior! They also give a more detailed description of what stimming is and why people may stim, including the above quote about stimming for emotional regulation.

IMG_5281
From the Ausome Cork facebook page: 8 Functions of Stimming

My most reliable stim is skin picking. It can be embarrassing at times, since my upper arm is dotted with scars and scabs, but in the moment it is less noticeable than something like hand flapping (or running away screaming, lol), so I keep doing it. The sensation of it helps to alleviate almost any kind of tension, and also helps me stay focused on something if my thoughts are wandering (maybe by occupying the part of my brain that would otherwise be distracting me!). For example, if people around me (or even in a movie) are arguing and saying hurtful things, even if they are sarcastic or joking, I will start to pick to help calm down my physical reaction to the emotional turmoil I’m sensing around me. On the other hand, I’ll also pick if I’m bored and can’t do anything because I’m stuck waiting somewhere.

Hand flapping and deep breaths with loud exhales are stress-reducing in the way that pushing down the valve of a pressure cooker reduces the internal pressure – they cut out a lot of tension very rapidly but in a very dramatic manner – and I tend to only stim that way in the privacy of my own home. In class or other lecture-type environments, I write (notes, thoughts, or the alphabet), calculate irrational square roots by hand, draw geometric designs on grids, play games on my phone or laptop, or else generally become unable to sit still or pay attention due to my mind wandering off into some far off land and my physical tension steadily rising.

While stimming behaviors may appear strange or odd on the surface, therefore, it is important to understand that they can play a significant role in the life of an autistic person, as I am hardly a unique or extreme example. Trying to force someone to stop stimming altogether is going to be harmful in the long run: it will deny them access to some of their coping strategies for sensory overwhelm or emotional stress, and force them to spend significant amounts of energy and focus on holding in their stims at the expense of other things.

“If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?” – Cynthia Kim, Musings of an Aspie

However, not all specific stims are healthy, no matter how helpful they may be in the moment. My skin picking certainly falls into this category, as does any other self-injurious stim. In these cases it is worth the effort to find a replacement stim, if at all possible (I haven’t found one for myself yet), and it is emphatically better to consciously redirect towards a positive replacement stim than to simply try to eliminate the damaging one. Without that deliberate replacement, it is likely that an equally unhealthy stim will take over instead (for example, I tried to stop picking my arm last year and ended up creating sores all over my legs. Not helpful at all, that.) So if I ever figure out a good strategy for finding a replacement and making it stick, I’ll be sure to update you…

Do you stim? What do you do and why? Does someone you know? What do you think about it? It’s ok if it seems weird 🙂 – I sometimes think my own stims are weird even though I know why I do them and how it helps me!

 

Posted in autism acceptance month

seven challenges of autism

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

Yesterday I shared seven highlights of being autistic; today I’m sharing seven challenges. It would be dishonest to imply that autism is without struggle – that it is a purely neutral neurological difference – and it would make advocating for necessary supports far more difficult. We have to acknowledge what our problems and needs are before we can ask for help or expect others to recognize our challenges, after all.

  1. Social communication deficits
    • This is part of the diagnostic criteria for autism, actually. This is all the awkwardness and unusual behavior and missed cues – the differences in posture or gesture or volume that make a person stand out, or the more subtle tells of anxious fidgets and poorly timed laughter. This is being 13 and hurting a family member’s feelings because you didn’t appear grateful for their Christmas present, and being totally confused about it because you thought you had done everything right. This is being in high school and having a peer tell you that you really ought to look someone in the eye when having a conversation – and then learning to focus on people’s noses instead, so well that your psychologist doesn’t realize that’s what you’re doing (this may be part of why I like large and distinctive noses 😛 ). This is laughing with everyone else even though you didn’t understand the joke, or laughing at statements that no one else finds amusing. This is forgetting social scripts because you’re just so excited about something, and jumping right into the topic without the formalities of the greeting first. This is mistiming the breaks in the conversation and either cutting people off before they’ve finished or pausing too long and making them think you’re tuning out. It looks different for everyone, but it is always present and it takes a toll; even if you can play the part most of the time, it can be extremely draining, and when you can’t act that role you risk stares and stigma.
  2. Sensory sensitivities
    • This can also be a major struggle for many (most, probably) autistic people. Noises (even at normal volumes) can be physically painful or excruciatingly uncomfortable, as can certain smells. Textures – as relates to both touch and taste – can be incredibly important. Rondel cannot tolerate the texture of foods like banana, avocado, and sweet potato, for instance, and craves very cold or very dry foods instead. Touch can be very overstimulating; for example, we were releasing ladybugs and while the kids were letting them walk all over their hands, the feel of their feet on my hand made my whole body tense up and lingered for hours after the fact. While every autistic person is going to have different sensitivities, it is fair to assume that all of us will “overreact” to some sensory input in potentially unexpected ways – and it’s just the way our minds and bodies work together.
  3. Language development
    • Many autistic people struggle with some sort of language impairment; autistic speech ranges the full spectrum from non-verbal to completely fluent, but even the most verbal individuals tend to show certain idiosyncrasies. Some autistic individuals use assisted communication devices to help express their thoughts and feelings in words when they can’t do so verbally. My friend’s son can speak a limited number of words and phrases (always increasing!) that he uses to express a large range of questions and comments. Rondel began speaking rather earlier than normal, but his speech was very difficult to understand and his grasp of pronouns is still shaky (he refers to himself in second person, especially in emotionally charged environments). I used to have fairly significant echolalia, and would repeat whole sentences or the final few words of a sentence after speaking (I remember doing it quietly for a while, and then just in my head eventually. At one point my mom told me that she had considered taking me to a professional about it when I was little, but it tapered off on its own). Language abilities are not an accurate indication of an autistic individual’s intelligence or communicative desire, however. Amy Sequenzia is an excellent example of a person who, despite not being able to speak, has intelligent and powerful thoughts and ideas to share – she just uses the written word instead of the spoken word to do so.
  4. Rigidity (discomfort with uncertainty and change)
    • An autistic person doesn’t necessarily have a rigid schedule for each day which must be followed down to the time at which they use the bathroom – that’s a bit of a stereotype. But routines are most certainly a source of stability and thus of comfort, and it takes some time for the autistic mind to recalibrate when those routines are changed. Just today, for instance, I had to do bedtime with all three kids on my own, so I brought Aubade’s bed into the boys’ room and talked all afternoon about how we were going to have a sleepover and I would be snuggling with Aubade so I’d still be in the same room as the boys. When bedtime actually came, however, and the normal routine was altered by the fact that I was on Aubade’s bed rather than one of theirs, Rondel couldn’t handle it. He became angry, defiant, argumentative, and so keyed up that he couldn’t stay still or quiet, until he left the room for a bit to rage away his discomfort and adjust to the changed circumstances. I have found that for both myself and Rondel it is best to have a clear idea the night before (or at least first thing in the morning) what the general plan will be for the day, so that I’m not setting up expectations to be unmet, and to be honest and patient when plans do have to change.
  5. Anxiety
    • When I spoke with my psychologist on Thursday, she mentioned in passing that anxiety is such an assumed aspect of autism that not all clinicians even bother to mention it separately on a diagnosis. I always, always thought anxiety was normal. I didn’t realize until adulthood that most people don’t feel sharp pain in their chest after every significant social event (like an evening spent with a date), or have to do breathing exercises before making a phone call, or go through life with a generalized fear that they’re going to make a mistake and ruin everything, or scratch their skin until it bleeds to keep the nervous tension manageable. I didn’t even know that all of that was called anxiety until my youngest sister was diagnosed and I found myself trying to explain it to our middle sister… it was just how life was, for me. And apparently that’s how it is for most autistic people; according to Chris Bonnello’s 2018 autism survey (with over 11,000 responses), about 60% of autistic people struggle with anxiety disorders – it was at the top of the list of co-occuring mental health conditions.
  6. Intellectual impairment
    • This isn’t a side of autism I’ve personally experienced, except potentially secondhand though my friend’s son (although it is hard to tell because of his language delays). But according to the scientific literature at least half of all autistic individuals are also intellectually impaired, and in clinical terms this is the dividing line between “low-functioning” and “high-functioning” autism (I’m aware some people dislike these terms for their over-simplification and potentially demeaning tone, but as they’re used in the scientific literature it’s helpful to know the definition of the terms in that context). Autism advocacy that ignores this half of the autistic population is thus woefully incomplete! And this is definitely a challenge, given the unreliable quality of special education in the schools and residential support for adults. These people are at the highest risk of being abused, neglected, or taken advantage of, and it is important for society as a whole to realize that having less intelligence – just like having poorer social skills! – does not make a person less deserving of dignity and as much autonomy as is feasible.
  7. Emotional expression
    • Emotions can be terrifyingly treacherous for autistic people. They can be devilishly difficult to decipher, acutely uncomfortable to witness, and extremely explosive to experience. I find myself trying to share with Rondel the same lessons I had to learn about the anger that tries to take over, and empathizing with the overwhelming strength of those volatile emotions (I still have them after all – I’ve just learned more coping strategies by now). Some of the scenes in movies that are most moving to my husband are intensely horrible for me because of the raw and visible emotion involved; I can engage more fully with the character’s emotion if it is diluted or filtered somehow, like through the written words of a book or animation and scripting aimed at a younger audience. Otherwise it is too overwhelming. Similarly, I struggle to talk verbally about things that are important to me (or things that have a lot of anxiety wrapped around them). Both my mom and my husband have at different times in my life maintained a joint journal where I could write down things I needed to express and communicate and receive written responses without the anxiety-ridden emotional tension of a face-to-face conversation.

Every autistic individual struggles with different challenges, and these are just a few of many. I didn’t touch on the existential loneliness of feeling disconnected and different and left-out; the low employment rates of autistic adults; the common physical co-morbidities associated with autism; or the ever-present mask and concomitant imposter syndrome. But I think it is important to share another finding from Chris Bonnello’s survey: that of all his autistic respondents, less than 15% would take a cure for autism if it existed.

cureforautismsurveygraph

Challenges and all, autism is a part of our identity and to remove it would be to fundamentally change who we are. Instead of trying to do that, let’s acknowledge our differences and struggles and design (or improve, or strengthen) the societal supports that will allow autistic individuals to flourish and thrive in their own unique way.

Posted in autism acceptance month

seven awesome things about being autistic

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

Because autism is still seen in a largely negative light, I thought I’d cover some of the positive aspects of being autistic before addressing the challenges associated with it (you can come back tomorrow for that side of the coin). And since today is also the {sqt} linkup with Kelly, I have seven positive autistic traits listed here!

  1. Systems-oriented thinking and pattern recognition
    • “Autistic systems-oriented thinking, developed to its fullest potentials, means insight into the rich depths of underlying patterns and structures, the beauty of the deeper levels of natural order beneath surface realities, the beauty of the Tao.” – Nick Walker, “Autism, Aikido, and Systems-Oriented Thinking”
    • This is probably the defining characteristic of my method of approaching the world. I strive to organize the data I observe into systems and structures and patterns, always editing them to encompass more complete datasets, always delighting in each new connection and relationship I can find. As a kid, it meant I was quite good at games like Set (which is all about patterns), and loved exploring the grammatical structures of language and the mathematical patterns of numbers. In school, it meant I was able to assimilate information from different classes into a cohesive whole, giving myself a strong network of data to pull from for tests and projects. At work, it means I’ve spent a lot of my time learning database science on the side to help my team process and record information more efficiently, to pull out the patterns and connections between the datapoints we need to store. And personally, it means I never settle into one philosophy of life – new information can always shift my internal understanding of the structures of reality, hopefully into a more accurate conformation 🙂
  2. Sensitivity to beauty
    • Increased sensory sensitivities, while definitely a challenge at times, can be accompanied by increased awareness of and sensitivity to beauty in the world. This could be natural beauty: the still blue of a cloudless sky, or the undulating mist off a waterfall; it could be artistic beauty: the throbbing pulse or soaring heights of instruments that express emotion we could never put into words; it could be the small and unnoticed details of life: the scent of rising bread or the sweep of curtains blowing in the wind. Just as we can be inordinately bothered by sensory inputs most people don’t notice, so too we can see and be awed by the beauty of things most people don’t notice – like the texture of a piece of fabric, or the feathers on the back of a moth.
  3. Powers of observation
    • This is connected to the first two traits, obviously: good observational skills are needed to create useful systems for understanding the patterns of reality, or to find beauty in the details that often escape attention. It makes a lot of sense in light of the definition of autism I shared here earlier also – if the autistic mind is taking in more information more intensely than the neurotypical mind, it’s going to be able to observe more details. Rondel notices all the bugs around him wherever he goes, and pays attention to the shape of their bodies and the patterns of their color; when he wasn’t even two, he was able to figure out the make (and often model) of a car by paying attention to the details of its shape and design. A friend at church notices the relationships between the people around him, putting together the connections of family and friendship in his mind even though he struggles to articulate them verbally. I was apparently able to see instantly if something had been changed in a room when I was a very young child. The details we observe may not always be particularly useful, but our minds are thirsty for them, hungrily seeking out the information around us to store away inside.
  4. Honesty and Loyalty
    • Many autistic people are highly uncomfortable with untruths. As the author of the blog An Intense World says, “It’s not that someone with autism cannot lie. I can lie… [but] when I lie, it really, really, really, really, really bothers me. It’s like a deep brain itch I can’t scratch. So I don’t lie. It just bothers me too deeply, and I’d rather not be that uncomfortable all the time.” I’ve found that I can tell incomplete truths if absolutely necessary, but even that is difficult to do – part of me wants to provide all the information involved so the communicated picture is accurate.
    • Many autistic people are also highly loyal. While autistic individuals may not form many attachments, the ones we do form are deep and lasting. I can see this already in my son: while he has normal conflicts with his siblings, he has equally as many conflicts with me because he identifies himself so strongly with his siblings that he is ready to fight for them if I reprimand or correct them. As Cynthia Kim writes on her blog Musings of an Aspie, “My attachments to people are few, but when I do form a bond with someone it’s a strong one. I will stand up for the people I care about in the face of a great deal of opposition.”
  5. Creativity and Unique Problem-Solving Skills
    • Autistic people see the world differently – so the things they create and the solutions they envision are also often a bit different! In my personal life, I see the unique style and form of my sister’s poetry and other creative writing; the way a child with severe speech delays at my church is able to communicate his thoughts through actions and echoed scripts; and the endless repertoire of “games” my son designs to explore his interest in the animal world and include his siblings at the same time (not to mention his eye for three-dimensional representation of said animals). When I was in high school volunteering in the children’s ministry at my church, a young boy who was later diagnosed with Asperger’s (part of the autism spectrum) noticed the folding table wiggling one week, crawled under the table, and proceeded to analyze the joints until he’d discovered multiple potential causes and tried to fix them. And he was only five!
  6. Deep or abstract thinking
    • Rondel asked me the other day why Jesus needed the disciples if He is God and can do anything. He asks me if God can know what we are going to do before we do it, and how that works, and seems to understand the answers I give him. He wants to know how high you can go before the air ends, and why the earth holds the air to it, and what exactly gravity is. He asks me if I will always love him, and why, and how I know that I will, and the answers give him peace when he’s recovering from a struggle with his more negative impulses. Autistic people usually don’t have much “common sense”, but our minds like to explore the deeper questions of life, and we are often able to separate facts and ideas from their social context to examine and compare them on a level field or in a new context.
  7. Expertise (and special interests!)
    • When the autistic brain gets excited about something, that thing becomes rather all-encompassing. We can spend hours a day for months or even years absorbed in the thing that is so fascinating to us – and as a result, we can accumulate some serious expertise in those areas! Rondel is a good example of how this can look in young children. His first special interest was vehicles, and as I noted above he was a master of vehicle identification at a ridiculously young age (I once asked him if a particular car that he’d told me was a Mazda was a Mazda 5 or a Mazda 3 hatchback and he knew the right answer without hesitation…). Next came dinosaurs, when he learned so many different species of dinosaurs that his grandparents were amazed (and often emphatically corrected!). Now that animals are his primary focus, he can talk for hours about the characteristics of different animals, the interactions between them, the environments they live in, and so on. By the time an autistic person reaches adulthood, they’ve cycled through quite a few of these interests, providing themselves with a solid network of information to build upon for the next one (or for more mundane things like work). And even in areas that are not special interests, autistic skills in observation and pattern recognition can lead to the development of expertise, as I’ve found in my own work environment.
    • Beyond the usefulness of expertise, of course, special interests are a source of pure joy. Rondel is so happy when his mind is full of animal facts and stories and experiences, and he’ll engage with anyone available about the topic. I am so happy when I’m reading Harry Potter fan fiction (my current most embarrassing interest) that I struggle to stop reading and do anything else, and if someone is willing to listen I can share all my favorite theories and plot lines and alternate universes until they manage to escape. It is satisfying in a profound way to plunge into the depths of something and discover the hidden treasure within, to block out the overload of information from everywhere else and really seek to know one specific category of things. And experiencing that joy is one of the most awesome things I can think of about being autistic.

If you are autistic, what is one of your favorite things about it? If you have a friend or family member who is autistic, what is one of your favorite things about them that stems from the fact that they are autistic?

Posted in autism acceptance month, information, quotes

the autistic operating system

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

I still remember the first time I heard of autism, although I don’t remember exactly how old I was (I think I was younger than 10). My dad was talking about one of his coworkers who had twins, telling my mom that while one of the children was developing normally, the other didn’t speak and liked to watch objects spin instead of playing with them in a typical way. My major impression was that autism was a sad and life-ruining thing (probably because my dad said it was sad), but I didn’t really understand what was so wrong about this little boy’s way of being and developing. In hindsight, I think this was the first time I realized that there was a “normal” way to be and that there could be something wrong about being different.

In the years since then, I’ve learned a lot more about what autism actually is: not a spectre of damaged children unable to connect and interact as humans, but a different neurological operating system that manifests in a fairly consistent range of behavioral patterns. Interestingly, these behaviors do not include either intellectual or language impairments, although both of these can present along with autism in an individual. Instead, autistic differences center around areas of social communication, sensory processing, and cognitive focus (including executive functioning). Autistic development is not necessarily disordered – it just proceeds on a different timeline than normal. Autistic ways of thinking, of processing sensory information, of handling emotions in the self and others, are not broken – just different.

The medical definition of autism can of course be found in the DSM-V, and I believe it is good to read and understand that definition even if it does portray autism in a pathologized way, but my personal favorite description comes from Nick Walker at Neurocosmopolitanism (go read the full article!):

The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable. (emphasis added)

Walker puts so much useful information into this paragraph. While lists of common autistic behaviors can be helpful, especially when deciding whether an ASD diagnosis might describe yourself or someone you know, they can often seem disjointed and random without an understanding of their underlying cause (and, I think, can contribute to the common uninformed statement that “everyone is a little bit autistic).

But knowing this central difference between the neurotypical and autistic brain can provide a clearer delineation between the two, regardless of potentially overlapping behaviors, and can also explain many of the strengths and challenges associated with autism. For example, autistic individuals can often have excellent long-term memory and fact recall, as well as higher innate abilities to analyze data and detect patterns – all of which makes sense if the autistic brain is picking up on more information (with more internal emphasis), on a cognitive level, than the neurotypical brain. On the other hand, picking up more information with a stronger impact on the sensory level can make coping with everyday life extremely difficult, when “normal” touch and sound and smell can be acutely uncomfortable or overwhelming.

I’ll be going through more of those differences, both positive and negative, later this week, but for now the important point is that all autistic traits and behaviors stem from a fundamental neurological difference, and that autism, this difference in a person’s innate operating system – in the way they perceive, process, and respond to the world around them – does not make an autistic individual any less in terms of personhood, human dignity, ethical consideration, or worth.