Tag: autistic adult

Posted in musings

books

Posted on by kristinabean
Quote overlaid on image of the sides of books: “Books are the quietest and most constant of friends; they are the most accessible and wisest of counselors, and the most patient of teachers.” – Charles William Eliot

Over my lifetime I have read thousands of books (estimating from the years I’ve actually kept track). Books are easier than real life: the author filters out most of the irrelevant information from the narrative, internal perspectives provide verification for the emotions being communicated through a character’s body language or tone, and confusing sections can be reread until things make sense while the rest of the book waits. So sometimes it can be a nice escape from the complexities of life to dive into the world of a book – but on the other hand, spending so much time analyzing social interactions in written form helps me to understand them better when I encounter them in the wild, so to speak. There have been countless times when I’ve noticed something happening and thought, “oh! I’ve read about this! What was a helpful response when this happened in the book?” and based my reaction off of what I’ve read.

(The one time someone tried to bully me as a child I thought, “oh, I’ve read about bullies. They are usually sad and insecure people. Poor kid.” I was also highly amused that he though I’d be offended by the name “Four-Eyes” when it was a taunt straight out of the books! How unoriginal!)

Books also help me understand my own emotions. As the characters experience situations and as their emotions are described, I try to put myself in that situation and feel those emotions. This is anxiety: observe the triggers, observe the physical response, observe the words that are used to describe the associated emotional response. This is happiness; this is grief; this is insecurity; this is attraction; this is contentment. I feel things extremely strongly, but I struggle to understand those feelings, and books help me create a reference against which I can evaluate and by which I can name my own emotions as well as the emotions I see in others. And it does this in a safe way, allowing me to proceed at whatever pace I need to, not overwhelming me with sensory input about an unfamiliar or upsetting emotion.

(This is probably why I enjoy books with a lot of emotional content even though I am very uncomfortable with emotional expression in movies or in person. I can take a break if I need to, I can process the emotions slowly and through multiple filters, and I don’t have the intense sensory input of a strongly emoting person to deal with while I’m figuring out what’s going on and why. And I do think it gives me a foundation to work from when I encounter those emotions in the real world, whether in myself or in others.)

So I’m thankful for the gift that books are to me – that on top of the enjoyment of a good story, I have their help in deciphering the puzzle of emotion and social communication, in decoding the physical clues that reveal someone’s feelings, in learning the rules and patterns of social behavior. And that when I need them, they are always there to be my friends.

Posted in autism acceptance month, book review

autistic #ownvoices fiction: the boy who steals houses by c. g. drews

Posted on by kristinabean

Title: The Boy Who Steals Houses
Author: C. G. Drews
Date of Publication: April 2019
Rating: 4.5 out of 5 stars

So I have to admit that I have a not-so-secret love of angst, longing, and heartbreak in the books I read. Every time I read a story of someone searching for family, home, acceptance, love, etc., and especially of working through the challenges of trusting in those things when they show up, it hurts my heart in such a hopeful way. I remember back in high school telling my dad that I just wanted to feel like I belonged somewhere – like there was someplace where I could be completely exposed and still be completely accepted – and I think it must be a fairly common human desire because so many books touch on it. In The Boy Who Steals Houses, C. G. Drews beautifully describes both that longing and the thing itself: the desire to be loved unconditionally, and the shapes that unconditional love can take in very imperfect people and circumstances.

I can’t think of another book I’ve read that looks at autism from the outside (the main character, Sam is not expressly autistic – his brother Avery is) with such tenderness and acceptance. Sam gets frustrated with Avery and Avery gets frustrated with Sam, like any two siblings, but they love each other so fiercely, so intensely, with such mutual protectiveness. Sam tries to protect his big brother from a world that doesn’t accept or even care to understand his autism; Avery tries to protect Sam from his own anger and from the justice system. Avery stims; Avery gets overwhelmed; Avery has meltdowns and has to be rescued and pulls Sam in to the lowlife world he’s ended up in; and through it all Sam just loves and loves and loves him – and Avery loves him back. At the beginning of the book, since it’s told through Sam’s perspective, most of the narrative is showing Sam’s love and care for Avery; by the end of the book (letting the reader realize it along with Sam, I believe) the narrative shows also how Avery has always been there for Sam loving and caring for him as best he could, through all the bad decisions they’ve both made and all the bad things that have been done to them.

But Sam is really the heart of this book, with his anxieties and his desperate longing for home and family and acceptance and belonging and love. I was instantly drawn in to his story; I’ve read it twice already and will probably read it again since I can’t get him out of mind (and since Drews ended on what was essentially a cliffhanger!). To be seen and known and loved no matter what – that is the treasure Sam is searching for, and the book holds out hope that he may finally find it.

The only reason I’m not giving the book 5 stars is that the writing was a bit over-dramatic at times. Sometimes the stylistic effects really contributed to feeling the characters’ emotions; other times they seemed over the top (but that may just be due to my own intense discomfort at overtly expressed emotion). Oh, and the ending 🙂 If only a sequel were forthcoming!

C. G. Drews has written one other book, A Thousand Perfect Notes, which I have not read (I’m still too caught up in the lives of these characters to move on!). She just posted a Q&A post celebrating the one-year anniversary of The Boy Who Steals Houses that is great in itself and also links to an article she wrote about writing #ownvoices fiction and autistic representation in fiction specifically, which I found to be quite good.

Posted in autism acceptance month, sqt

{sqt} – autistic #ownvoices fiction

Posted on by kristinabean

In the midst of all the covid-19 craziness, life goes on. It’s still Lent, for about another week, and there will still be Easter, and it’s still Autism Acceptance Month now that it’s April! This year, my focus will be on books of fiction written by and/or containing autistic main characters.

Why fiction? There are a lot of good memoirs written by autistic individuals, and non-fiction books addressing autism, but fiction in particular taps into the imagination and vision of the reader. It opens up new perspectives and potentials, allowing the reader to enter into new worlds, relationships, and experiences. So for the neurotypical reader, encountering autistic characters in fiction (assuming they are well-written!) can make autism understandable, relatable, and more human, which will then hopefully translate to the real world. For the autistic reader, those characters can give them people to identify with when they may be surrounded by neurotypical society in real life and in most books.

Another advantage of fiction is that it is more likely to be read by people who aren’t interested specifically in autism – at least not enough to seek out a non-fiction book on the topic – but who are looking for a good story to immerse themselves in. In this way, books with autistic characters can help bring awareness and acceptance of autism to a more mainstream audience.

It’s not so helpful, however, to read fiction with autistic characters if those characters are stereotyped, flat, or defined by their atypical behaviors rather than shown authentically as human beings with complex internal lives and emotional ranges. For that reason, fiction written by autistic authors is particularly valuable, as these authors tend to have more reliable insight into the processing and perspective of autistic characters than neurotypical authors have. It is possible for non-autistic authors to write autistic characters well, of course, and I think it’s important for fiction writers to try to write from a variety of perspectives, but in my experience autistic characters written by autistic authors are much more accurate to life and multi-dimensional.

For those reasons, most of the books I’ll be reviewing this month are #ownvoices autistic fiction – books with an autistic protagonist or important secondary character written by an autistic author – and the exceptions will fit into either one or the other of those categories. I’ve written three reviews already, I’ve read two more books that I need to write up, and I have 2-3 more in reserve – but if you have any suggestions of books you’ve loved or that sound interesting, please let me know! It was difficult to find books in this category and so I’d love to be able to put together a more comprehensive list by the end of the month.

I’m linking up with Kelly again this week – head over and check out the rest of the linkup!

Posted in Uncategorized

autism comic

Posted on by kristinabean

I came across this comic the other day and completely related to it! As in, this is me not just every night when the kids are asleep and I have self-directed time, but every time that the whirlwind of planned activity, schedules, and input from other people (mostly the kids demanding things 😉 ) stops long enough that I have to decide what to do next.

The character Stimmy Kitty is lying on a couch. First panel: she thinks, “I need to get up.” Second panel: she thinks, “But do I do my homework or my chores? What chore do I need to do first? Do I clean my room so I can do my homework?” Third panel: her thought cloud surrounds her (evoking her mental overwhelm) as she thinks, “No… Or should I draw instead? Maybe a better idea would… But what about feed… What I really want to do is go on a walk, but first I… What is wrong with me? I still need to do chores but How do I even get up? Which foot first? I can’t move.” Fourth panel: a voice off-screen says, “You need to get up.” Stimmy Kitty replies, “I can’t.”

The artist behind this strip, Steve Asbell, has a whole series featuring Stimmy Kitty here. The comic illustrating the build-up to a meltdown/shutdown was also one I particularly identified with, but really they are all quite good and you should check them out if you’re not already familiar with them!

Posted in sqt

{sqt} – biking!

Posted on by kristinabean

I’m joining the SQT link-up today, hosted by Jen at Meditatio this week! She mentions in her takes that she’s been blogging for 20 years which I find completely amazing – head over to read the rest of her post as well as the other linkers 🙂

  1. I’ve worked at the same place for close to 10 years now and I’ve commuted by bike off and on throughout that time – from two different homes, on three different bikes, and across widely varying work schedules. Currently I’m riding a $5 3-speed cruiser with pedal brakes that I bought from a retiree in a trailer park in Apache Junction and biking mostly at night.
  2. Biking at night is very different than biking in the day. I actually wear a helmet now (with a headlight strapped around it and a built-in taillight), and a fluorescent pink vest with reflective stripes. I have pictures but they’re pretty awful 😛 Safety over fashion though! I’m very visible and I can tell that most drivers are giving me a wide berth, but a lot of people just aren’t expecting a biker or feel irritated by the presence of a biker and don’t drive as safely as they could.
  3. I also put cost over fashion and instead of using something like real bike panniers to carry everything I need each day at work, I just have a plastic crate zip-tied to the rear rack of the bike. (I actually Googled how to do this just to make sure it would be stable and I found the most hilarious step-by-step guide. If you need a laugh, or want to attach a crate to your own bike, check it out!)
how not to tie a crate to a bike, image courtesy of the Eugene Bicyclist blog mentioned in take 3
  1. The hardest part about biking to work is making myself do it. Every day I think, “I’m tired, I don’t want to push myself that hard”, or I put off packing a change of clothes or procrastinate checking my tire pressure and lubricating my chain ($5 bikes haven’t had a lot of TLC in their lives and they can really benefit from it. I reduced my commute time by 10 minutes just by lubricating the gear chain, after one horrendous commute home where the bike was fighting me the whole way.). It’s just easier to take the car, since most days I don’t leave until after Paul gets home and his little commuter car is available and driving it doesn’t mean stranding him with the kids.
  2. So why go to the effort? Because every time I get off my bike at the end of my commute, I feel less depressed, less anxious, and more motivated than I did when I got on it. (The therapist I saw after Aubade was born described it as mindfulness biking and it’s pretty accurate – I just sink into the present world around me, the warmth of the sun or the whir of the wheels or the light catching on the trees, and the whirl of anxiety fades.) Of course, in the long-term it’s also just a healthy practice since I don’t have another way to squeeze 25 minute intervals of hard exercise into my daily life, but those short-term benefits are what keep me getting on the bike each day.
  3. Another benefit to biking is the sensory experience of commuting in the dark. I really, really, really loathe driving at night. Between the windshield and my glasses, all the head lights and tail lights and traffic lights and building lights fracture across my vision like broken shards, stars and lines and webs and points that feel like they’re stabbing me, and I have to stay on maximum capacity and focus the entire time just to deal with the lights and be safe and aware. When I bike, head lights are sometimes too bright (and police lights are still desperately painful) but I don’t feel like my whole field of vision is splintering apart.
  4. The flip side, of course, is that a car with a loud engine and a driver who wants to rev that engine proudly is much, much louder without the walls of the car to muffle the sound; it makes me want to get off the bike and stim until I can feel calm again. I wear headphones and listen to music or podcasts when I bike during the day, but at night with the added risk of poor visibility I don’t want to dampen my other senses. So it can make things difficult – but still definitely worth it.
My eyes don’t make such geometrically perfect patterns with the light, and the dimmer lights fracture as well, but other than that this isn’t too far off from what I see. Public domain, picture credit JB Stran.

Do any of you have the option of biking to work? Have you tried it? I’d love to hear your stories and thoughts and experiences 🙂

Posted in musings

response to a sermon on worship

Posted on by kristinabean

I can definitely be an over-sensitive perfectionist, but I don’t think it is irrational to be hurt by a sermon about the role of the body and communication in worship that doesn’t even mention disability. There wasn’t anything technically incorrect with what was preached, but everything had to be translated, contextualized, or rephrased if it were to be relevant to the life of someone with a physical disability or social communication disorder. And it just leaves me feeling so unwanted in the church – feeling that people like me can never fully participate in the body of Christ because of issues with how our own bodies and brains both respond to our environments and express our emotions.

It is important to give the best of ourselves to God: all of our mind, heart, and body, as the gospels say. For the Israelites of Malachi’s time (the source text for the sermon was Malachi 1), it was important to offer the sacrifices according to the law instead of just giving Him their leftover and damaged animals, and it is good and right for us to remember that principle and follow God with singleness of mind and whole-hearted devotion. Translating that to the lived reality of worship music during Sunday service is not so clear-cut, however. I remember when I was in high school and thought I knew what was best for worship music: what types of music would best glorify God and lead people to honor and meditate on Him – and I wrote about it in a public forum, and I received the most graciously pointed rebuke I have ever been given for my arrogance. Fifteen years later, I am more aware of the diversity of the body of Christ: how each of us responds in a different way to different words and styles of music; how each of us can offer worship in a unique way; and how when we worship together we all must bend and accommodate others, both sharing from and holding back on our individuality so that we can worship as a unified body.

It is for this reason that I participate in the musical worship at our church, although it is difficult for me in multiple ways. I wear ear plugs so I can tolerate the volume; I sit on the end of a row so I won’t feel overwhelmed by the people around me; and when it’s really bad, I try to sit in a small area just off the sanctuary instead of going outside so that I can still be part of the service. I sing even the songs that I don’t particularly like (although I will skip lines that I feel are theologically inaccurate…), and when I can’t sing I try to meditate on the message of the songs. I don’t expect the worship service to be tailored to my preferences and needs, and I often find great beauty and encouragement through music I would never have sought out on my own.

When a pastor tries to tell his congregants how to worship, however, with the fear hanging over their heads that if they don’t get this right they will be guilty of offering their secondhand, broken leftovers instead of a worthy sacrifice, it is reminiscent of the same arrogance I had at sixteen. Jesus told the woman at the well that the time was coming in which God’s people would worship Him in spirit and in truth – so the way we move our bodies during a praise song doesn’t matter if we are centered on God and praising Him. Additionally, to imply that there are right and wrong ways to physically conduct oneself during musical worship – and then not to say what those ways are because everyone should know – is to pave a straight and smooth path to anxiety, shame, and a sense of inadequacy for anyone in the congregation who struggles with reading social norms and expressing feelings in an “acceptable” way.

I am positive that if autistic and intellectually disabled adults were moving and responding in worship in an expressive way that felt authentic to them, someone in the church would call it disruptive and try to make them conform to a more “normal” behavioral pattern. This same attitude is just as toxic in reverse, when it lands on people who tend to not show any emotional expression with their bodies. I prefer not to move in large ways, not to lift my hands and be exposed and vulnerable with a crowd of strangers around me, not to share my emotions with people I do not know well. God knows what is in my heart, and it is that which I offer to Him – He will not judge me for not moving my body in a way that aligns with neurotypical standards for deep emotional responses. He will not make me feel ashamed because my anxiety and sensory overload cause me to respond in a less than perfect way.

If the church wants to be truly inclusive, truly open and welcoming to those of us who feel and respond and behave differently, then the least it can do is acknowledge our presence. Acknowledge that some people cannot physically respond with lifting of hands or kneeling because of chronic pain or age or muscular dystrophy or any other disability. Acknowledge that for some people a verbal response is the most genuine and whole-hearted response they can offer in worship, because their authentic physical responses are buried under years of practice at masking to fit in with a neurotypical society. Stress the importance of the heart centered on God, and acknowledge the reality that the outward response can look radically different because disability and neurodivergence are real things that affect real people present in the body of Christ.

Posted in family life, musings, quotes, sqt

{sqt} – some awesome saints, and other thankful things

Posted on by kristinabean

I’m linking up with Kelly at This Ain’t the Lyceum today – head over and read the other quick takes!

  1. Right now, I’m so thankful for the communion of saints and for the wisdom of the church in setting up set days to remember them! I’m thankful for St. Therese of Lisieux, whose feast day was earlier this week, and her reminder to me that all that matters is to love God – and that I can love Him completely and faithfully in each small, tedious, mundane act of service and duty that I do. I’m thankful for her example of perseverance and submission, accepting the waves of life as God brought them and honoring the human authorities over her.
  2. I’m also thankful for St. Francis, who we celebrate today, and his radical yet simple life of faith. How could I not want to learn from and follow in the footsteps of a man who saw and respected the beauty and dignity of all nature without succumbing to the nature-worship of the ancients or the romantic poets, who received visions from God but interpreted them so literally that he may have been autistic and certainly appeared foolish, who embraced that foolishness and transformed it into complete humility, who designed his own way of life and faith yet never broke fellowship with the institution of the Church, who lived in utter poverty and served the least and the forgotten? When a person’s prayers are preserved 700 years after their life and still ring with deep resonance and passion, that is a person I want to emulate and honor, whose prayers I wish to echo.

“I pray, O Lord, that the fiery and sweet strength of Your love may absorb my soul from all things that are under heaven, that I may die for love of Your love as You deigned to die for love of my love.

St. Francis, prayer to obtain divine love
  1. I’m thankful also for the warrior saints – for the angel Michael, who we celebrated on Michaelmas, and for his legendary archetype St. George fighting the dragon. Life can seem so big and demanding and overwhelming to a child, like the dragon loomed large over St. George, but in the saint we find inspiration to fight our dragons, to get up and try again even when we are knocked wounded to the ground, until they are finally slain. Like Michael fighting demons to bring the message of God to Daniel, using his strength and courage and valor to persevere in obedience, so we can summon up those traits (by the grace of God, and by practice and growth) to fight back the temptations to fear, laziness, anger, and any other vice that besets us. We read an illustrated rewriting of Spencer’s version of St. George and the Dragon this year, and it has given both the boys and myself extra motivation to endure in doing good even when it is hard. We know there are dragons; it is good to be reminded that they can be killed.
  1. I’ve been thankful for the weather recently as well! The heat broke and several days of rain blew inland from a hurricane, just a couple weeks after I seeded for the fall garden season, so all the little plants are doing beautifully and the sweet potatoes (which had to be started in the summer) are absolutely thriving – I’m trellising them so the vines don’t take over the garden beds and the vines are at least six feet up the trellis already.
  2. The kids were also so excited about the rain, as it’s such a rare occurrence here and the monsoons were weak this summer. We went on walks all around the neighborhood to enjoy it, Aubade splashing in every puddle, Rondel searching for treasure along the way, and Limerick challenging my strangeness by biking around barefoot in pajama pants and a winter jacket…
  1. There have also been some hard days recently – my moods and autistic sensitivities both oscillate based on a number of factors including my monthly cycle, and irrational guilt plus social anxiety plus hair-trigger sensitivities to certain sounds or touch does not make for a pleasant time. But I am so thankful that Paul understands and supports me through those times. He might not relate to it at all, but he knows it’s a struggle I have and he carries the extra weight of it when I can’t without ever making a big deal about it or drawing attention to himself. He doesn’t get upset when I hide by myself in a curtained side area during church service instead of sitting with him on days when I can’t tolerate the people around me. He makes time for me to rest and then makes sure that it happens when I need it. In short, he is always showing me love.
  2. And finally, I’m thankful for prayer and the Word and a God who draws near to us and longs for us to draw near to Him. I’m thankful for the sacraments: for the physical and tangible things God uses to convey His grace, like the mud and spit He used to give the blind man sight, and the waters of baptism that cleanse more than just our bodies. I’m thankful for His plan of redemption, for the hope that all broken things will be restored and that the glory to come will outweigh the suffering of the present, for the opportunity to say yes to His will and be a part of making all things new.

What are you thankful for this week? I’d love to hear the good things God is working in your life, whether it’s in the weather or a book or a relationship 🙂

Posted in autism acceptance month, sqt

autism and faith

Posted on by kristinabean

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 a neurological difference that impacts the way a person perceives and makes sense of the world around them, it affects every part of an autistic person’s lived experience: from school and work, through friendships and marriage and parenting, to religion or lack thereof. For the seven quick takes linkup this week, I’ll be sharing seven thoughts connected to the autistic experience of faith: one study, three aspects of religion that may make faith more or less difficult for autistic individuals, and three essays from other autistic writers (two Christian, one not religious).

Don’t forget to visit Kelly at This Ain’t the Lyceum for the rest of the linkup!

  1. According to a study from Boston University, autistic individuals are more likely to be atheist or agnostic and less likely to belong to an organized religion. While a statistical study of this type cannot explore (and categorize, and analyze) all the various reasons that lead individuals to religious decisions, this particular study also coded several forums for various thinking traits and noted where they differed significantly between autistic and neurotypical populations. Perhaps not surprisingly, areas of difference included emphasis on rationality, social discomfort, and social disinterest. Let’s run with those areas of difference for a while.
  2. In modern Western culture, rationality, logic, and clear, critical thinking is most often associated with atheism or at least agnosticism. Autistic individuals are not exempt from the pull of those cultural associations – and it doesn’t help the cause of religion when it is publicly tied to pointless traditions and illogical, superstitious thinking. As a scientist, I see God’s glory shining brilliantly in the intricacies of biology (from the ecosystem level down to the molecular, everything so tightly bound together in ever-widening webs). I see it in the laws of logic and math that provide a pathway for understanding and explaining reality and truth. But if someone grew up being told that burying a statue in your backyard would help you sell your house faster, or that the whole Bible was intended to be read literally despite clear indications of allegory and myth (in the Lewisian version of the word), or that mental illness was a result of a lack of faith – that person would have a much harder time reconciling the beautiful logic of science with God. Since autistic individuals are on average significantly more likely to emphasize rationality in their thought processes, that difficulty would be compounded for an autistic person and be much more likely to end in a rejection of faith.
  3. Social discomfort is an aspect of the autistic lived experience of religion that might be missed from a neurotypical perspective – but it is certainly significant. There are weeks where simply staying in service on Sunday is a struggle for me, because of the anxiety surrounding the social environment. Even on a good week I typically avoid talking to anyone during the official greeting time, and an unwanted intrusion (read: friendly tactile greeting from happy neurotypical to poor sad girl sitting with her head down who must be lonely) can make the rest of the service almost unbearable. For someone entering a religious service from a different background, the discomfort, uncertainty, and anxiety can be even worse.
  4. Social disinterest is a related but distinct phenomenon. Many neurotypicals keep going to church because of the community they find there: the friends they make, the chance to catch up on what everyone is doing, the networking and small talk and friendly interactions. This is unlikely to be the case for an autistic individual (or at least it will be less of a factor). I go to church because it forces me to focus on worship and the Bible, and because I know intellectually (and believe from what the Bible says) that the community of faith is important in a spiritual and eternal sense. But I don’t draw energy or encouragement from any of the trivial small-talk that surrounds it. If an autistic person does choose to be part of  an organized religion, it is very likely that they actually believe it to be true, and are pursuing it despite the discomfort and disinterest of the social experience of it instead of using it as simply a source of friendship and community. I suppose that is a positive, actually. Believing in something really seems like the only rational reason to go through the actions religion necessitates.
  5. “Because that was always something that bothered me before university: I knew so many Christians who firmly believed that God’s works were the result of some kind of magic rather than science. It felt like intellectual dishonesty to agree with them, but I didn’t have the breadth of experience to know that I could disagree with other Christians and still be a ‘valid’ Christian myself.
    You see, I have always believed that science was God’s ‘computer’, or at least his OS. Just the same as how nobody designs a game without a playable set of rules, you wouldn’t create a universe without a decent set of physical laws, and a few handy mathematical constants.
    Honestly, the deeper I looked into mathematics and its uncompromising logic, the more I appreciated how beautifully God crafted the universe. Religion encourages us to find God’s amazing works in the mountains and rivers and sunsets, but if you have a mindset like mine and want to witness God’s glory, take a look at his OS.” – Chris Bonnello, Asperger Syndrome and Religion: Reconciling Logic with Faith
    Please read this whole article! It is a great outline of one autistic person’s reasons for faith and lived experience with religion, and hits on a lot of points that I’ve heard from other autistic people.
  6. This article by Brett Hanson touches less on the reasons to have faith and more on the religious experience of autistic individuals. Like Hanson, I find myself distracted from the overall point (and emotion) of a sermon or worship song because of an error in one small detail in that sermon or song. I realized in junior high that while I found it easy to meditate on and praise the life that we have in God, and the light that comes from God, it was harder for me to understand the love of God and feel it in an emotional way (looking back, I see that I didn’t feel or express things the same way my peers did, and so thought I must be missing something). It can make “fitting in” more difficult – but that attention to detail can push someone to deepen and broaden their theological knowledge, and that resistance to emotional sway can help someone ask hard questions and push for the truth when it might otherwise be obscured.
  7. Finally, this article by John Elder Robison is an excellent examination of historical reasons why autistic individuals may have poured themselves into the church, although the author is not himself religious. He sees in the texts of early church leaders the systematizing, logical thought processes of the autistic mind. In the great cathedrals, temples, and pyramids he sees evidence of autistic skills at work, intuitively grasping concepts that modern mathematics and engineering are still uncovering. As he writes, “[…] the church was as a bastion of structure, logic, and reason for its era. In those years, the church and the military were two places a young man could go to find order and rationality.  If you were a thinking sort of person, the church offered the kind of home some of us seek in universities and laboratories today.” 

My final thought would be that, ideally, the church would still be “a bastion of structure, logic, and reason.” God is equally the great engineer and scientist as He is the great artist and poet, is He not? So too church can be the pillar of logic, the laboratory of theological and philosophical inquiry, just as much as it can be the neighborhood block party or the safe space for sharing emotions and struggles.

Posted in autism acceptance month, sqt

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

Posted on by kristinabean

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

Posted on by kristinabean

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?