autism – little thoughts

church unity and social media bubbles

Posted on 2021-04-11 by kristinabean

It’s becoming fairly well known these days that the algorithms used by social media tend to lock us in to an ever-shrinking bubble, where we only see things that already align with our views (unless we purposefully join groups we disagree with to seek out different views). I hadn’t really thought about it much until I logged on to Facebook early this month, after about half a year with almost no social media, and belatedly realized that I hadn’t seen a single puzzle piece or “light it up blue” post for Autism Awareness day. No ableism, no “search for the cure”, no questionable medical advice – nothing.

If I had taken my Facebook feed as an accurate microcosm of the culture around me, I would have thought that everyone had finally started listening to #actuallyautistic voices and started to see autism as just a different way of being human. Obviously, that isn’t the case (living in the real world and reading news from other sites makes this pretty clear) – but it is the snapshot of the world that Facebook filtered out for me.

It was a really enlightening moment for me. This is what happens to people who keep reading articles and liking posts and joining groups that are all on one side of the political spectrum: they see more and more of what they like, and less and less of what they’ve avoided, until they begin to see the whole world filtered through those beliefs – which makes it easier to perceive anyone who doesn’t share those beliefs as ignorant, deluded, or extreme. It happens with “natural wellness” as well, until people who just wanted to incorporate preventative herbal remedies into their lives find themselves surrounded by reasons to avoid vaccines (which are medically tested in large numbers of people) and go on restrictive diets (which are not).

As uncomfortable as it can be to deliberately seek out articles, groups, and people with whom we disagree, I believe it is fundamental to balancing out our own beliefs and perceptions of the world. Even more than that, I think it is essential that those of us who are Christian do this; I don’t see how we can endeavor to create any kind of unity within the church otherwise. The unity that Jesus prayed for before the crucifixion, that Paul beseeched the Philippians to pursue – this cannot exist unless we are all willing to do the hard work of engaging with and listening to those with whom we disagree.

Lately, I’ve been reminding myself that God loves everyone, and that all of God’s creation is fearfully and wonderfully made. That means God loves the autistic person who struggles with social interactions and communication, and God loves the neurotypical parents who wishes their child were normal – without needing to change either of their neurotypes to make them more worthy of God’s love. God loves the black person pushed to the margins of society by systemic injustice, and God loves the white person who has profited from their race – without needing to change either of their skin colors. God loves the woman who has been told all her life that she can’t share her love of God from the pulpit, and God loves the man who has benefited from centuries of misogyny – without needing to change either of their genders.

I’ve been reminding myself that while God will always call us to growth, to increased wisdom and righteousness, and to greater closeness with God, God will not require us to become someone we were not created to be. God may ask us to deny ourselves so that we can love each other better; God will ask us to repent from our sin and become a new creation in Christ; but in all this God is leading us more deeply into our true selves. We may be only shadows of those selves now, but those shadows still show the shape and form of who we will be.

I believe that God does not tell autistic people that they are welcome as soon as they can stop stimming and look God in the eyes. God does not tell black people that they are welcome as soon as they straighten their hair and accept a lower place on the social ladder, or tell refugees that they need a job and a good grasp of English before they can enter God’s kingdom. God does not tell women that they must give up their desire to preach God’s word, or abandon their careers, or ignore their gifts of leadership.

(Following these lines of thought out further, though it leads me into tempestuous cultural waters, I would argue that God does not call gay people to sacrifice their romantic and sexual desires (unless a particular individual is called to celibacy like a straight person might be), nor does God call trans people to deny their gender and obey social expectations based on their sex at birth. God created us – with difference, with diversity, with disability – and all parts of us can reflect God’s image and bring God glory.)

In fact, if I am to fully grasp the scandalous immensity of God’s love, then I have to go one step further. I have to recognize that God does not simply love us in all of our human diversity: God also loves is in all of our human sinfulness. Even as God hates injustice and oppression, God loves the people committing it and wants them also to repent, and make restitution, and be reconciled to God.

My love is not this deep. I want to write people off as hopeless, beyond redemption. I want to take revenge mercilessly for the horrifying oppression and injustice I see – or I want to abandon people to their own ignorance and bigotry and discount their opinions as worthless. It is easier this way: to stay in the safe confines of my own little bubble, on Facebook and even in reality, to assume that my beliefs are right and leave the outside world to its own devices. In the face of these tendencies, what I pray is that I would trust in God’s vengeance, in God’s ability to weave justice and mercy seamlessly together, never weighing one soul as higher in value than another, and clearly seeing all our actions and all our intentions. I pray that when I work for the coming of God’s kingdom here on earth, I would strive to right wrongs and undo injustices and throw off every yoke, as Isaiah and Mary both sing – but that I would also strive to make room for repentance and new beginnings. I pray that I would value a unity that makes space for all God’s created people, in all our stages of growth, as we become more fully ourselves and more deeply God’s, and that I would always listen and love even when I vehemently disagree.

This means that when my pastor says something I disagree with – something that I think perpetuates injustice along gender lines, for example – I can not in good faith simply leave the church and find another. If I care about unity and if I care about love, I have to take that uncomfortable statement as an opportunity to open a discussion about justice and mercy and God’s crazy boundary-destroying love; to listen with love in my own heart to ideas that could hurt me; to remember that no person is so far gone that the mercy of God cannot reach them; and to take the chance that I might be the one whose beliefs are wrong or misinformed.

And it may mean that I need to find some groups on Facebook that I might be uncomfortable in 🙂

musings

identity

Posted on 2021-03-26 by kristinabean

I have only watched Barbra Streisand’s film Yentl once in my life – as a teenager, actually! – but it made such a deep impression on me that I still think about it regularly. I believe it was the first time I saw anything explore gender expression and identity with such emotional depth, and I recall feeling simultaneously deeply uncomfortable and deeply resonant with the story and main character (who, for those unfamiliar with the story, is a Jewish girl who creates a male persona (Anshel), so that she can study Talmud, and finds herself entangled in a love triangle of sorts with a fellow student (Avigdor) and the woman he hopes to marry (Hadass)).

In the scenes that have stayed with me most powerfully, Anshel sits at a dining table with Hadass, sometimes alone and sometimes with Avigdor and Hadass’s parents, watching the other woman and pondering her femininity. There’s almost a disgust for it, at times – for the lack of intellectual conversation, for the trivial concerns of cooking and making oneself attractive – and yet also an envy: a two-fold desire both to be the object of this womanly attention and to be able to win the love of another by playing this feminine role. The camera focuses on the beauty and delicacy of Hadass’s face and clothing, on her submissive care for the man she loves, on the softness of her hands as she hands him something. This happens three times in the movie, and while you can find clips of the first two on YouTube, the final brief reprise which has always been the most meaningful to me is apparently stringently protected. In it, Streisand sings of Hadass:

She’s mother, she’s sister
She’s lover
She’s the wonder of wonders
No man can deny
So why would he change her?
She’s loving-she’s tender-
She’s woman-
So am I.

In that moment, caught up in the emotional sweep of the film, I may have wept. “So am I.”

Continue reading →

musings

toward love, toward justice

Posted on 2020-06-11 by kristinabean

A woman from my church – the leader of our church’s ministry for neurodivergent and disabled children, and the mother of one of those children – asked me what my thoughts were on the recent protests, the black lives matter movement, and how it relates to the autism community. To be completely honest, I’ve been pondering exactly that for a while now. It takes a long time for observations to settle into my network of concepts and data, and longer still for me to verbalize those new connections.

There are of course obvious similarities between the black community and the autistic community, as there are between any minority groups simply by virtue of being different from the majority. I’ve been listening to Morgan Jerkins essay collection This Will Be My Undoing, and her childhood longing for whiteness – for the ability to confidently belong in circles of popularity and influence – mirrors the longing autistic people often have to be neurotypical. (If you see that the way you innately are makes you a target for oppression and shuts down opportunities for careers, friendships, and more, it makes it a lot harder to live authentically.) Building a society in which all people can belong, can be treated fairly, can move with equal confidence – this is good and necessary for the full flourishing of all minorities, no matter their race, ability, gender identity, or so on.

But the two situations are also very different, and it wouldn’t be right to look at the black lives matter movement and only see it in light of how I, as an autistic person, can relate to it. Our country has harbored violent discrimination against black people for hundreds of years, and the recent occurrences of police brutality (especially combined with the default reaction of many white people to defend and excuse the officers involved) show that it still exists despite the last 70 years of almost completely nonviolent civil rights action. I believe our most recent presidential election was also in part a white backlash to the previous eight years during which the Obamas held their power and influence with dignity, intelligence, and principled character. To a lot of people in majority groups, the thought of a minority group gaining power is threatening – and to prevent it happening they preemptively threaten minorities instead. And in our county, black people have borne most of that scorn, fear, oppression, and discrimination.

One last point I want to make is that oppression compounds. A black, trans, autistic woman is going to be at a massive disadvantage against the norms and institutions of our culture, even more than the average black woman. Just looking at the intersection of blackness and autism, for example, autism has historically been significantly under diagnosed in the black community (though it is getting better, according to the CDC) and the voices of autistic self-advocates are overwhelmingly white. When I think about how much having a diagnosis can benefit an autistic person, it makes me angry that just having darker skin can make it more difficult for an autistic person to get that diagnosis – not to mention the social supports following diagnosis that can help autistic people fully flourish and thrive.

The Bible shows us a vision of society that is radically different than what we have in America today, with our myriad lines of division and discrimination. When the Psalms praise God specifically as King, they do not say that He brings equality. Instead, they say He brings justice, righteousness, and equity (see Psalm 99). He doesn’t place us all on an even footing; rather He gives more grace where more is needed. He forgives more where sin is greater, comforts more where sorrow is greater, provides more where need is greater. As Mary sang in the Magnificat, “He has cast down the mighty from their thrones, and has lifted up the lowly. He has filled the hungry with good things, and the rich He has sent away empty.” As we work to build God’s kingdom, it is important for those with power and privilege to set it aside (or to be made to set it aside, when they have used it unjustly), to learn humility, that those who have been outcast or oppressed can also experience those good things. His kingdom, being for all nations and tribes and peoples, is conceptually inconsistent with racism, with in-group power hoarding.

The path from where we are as a country today to a nation patterned after God’s kingdom – a nation of justice and equity rather than injustice and oppression – is not going to be short or easy, and I definitely do not have the expertise to outline public policy. But I do know that change has to happen individually as well as systemically, and I can speak a bit about how to change and grow on that level. Just as I recommend reading books written by and about autistic people to begin to understand the autistic lived experience, so too I would recommend reading books written by and about black people to being to understand their lived experience (and of course I include talking to real people about their experiences as “reading”, especially if you are not a socially anxious introvert like me, since good conversations can be as edifying as good books). Read widely, and let your preconceptions be proven wrong – so your mind can be changed. Read deeply, so you can begin to empathize with those who belong to a different group and see the world from a different perspective – so your heart can be softened. Read prayerfully, letting the Spirit teach and convict you – so your soul can be moved to confession and intercession. For it is only when we have those three things that we can truly know and love the other – whether they are colored or abled or gendered differently than we are – and begin to work together on the institutional and systemic changes that must also take place.

musings

books

Posted on 2020-05-242020-05-20 by kristinabean

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.

sqt

finding joy in the little things

Posted on 2020-05-01 by kristinabean

Aubade has been so into princesses lately that I decided to make a couple little dresses for some of her tiny dolls, to match the princess costumes one of her aunts and uncles gave her for Christmas. I guess one silver lining of the quarantine is that I have a little extra time at home for little crafty projects like this! (Also, her pink nails are Crayola marker… she’s been coloring them to match her outfits!)

For Limerick, I wrote a few quick Python scripts to let him see some of his favorite number sequences up to whatever parameter he wants – Fibonacci numbers, triangle numbers, square numbers, powers of any base, and reciprocals of integers. He loves being able to see those numbers in more detail (and more quickly!) than he could with a calculator. So far I haven’t gotten him interested in trying to write his own code, although since this is his first time using a computer he does have the whole learning curve of the keyboard and trackpad to deal with first!

With Rondel I’ve just been reading and reading and reading. We started The Lion, The Witch, and The Wardrobe towards the end of Lent and have now finished it, as well as Prince Caspian, The Voyage of the Dawn Treader, and The Silver Chair. He absolutely loves worlds of fantastical beasts, bold adventures, kings and queens, and magic.
One of the hardest things about the quarantine is making sure we all get enough physical activity. The other day we set off on what I thought would be a short exploration through the neighborhood and ended up being a 3.2 mile trek (Aubade in the stroller, Limerick on his bike, Rondel walking)… but now the temperatures are hitting 100 every day and those long walks are a lot less enjoyable. Also I’ve been sick for the past week and really didn’t have energy to do anything active with the kids. My parents’ pool has been such a blessing, as their house is the one place we are still taking the kids, but for the first time I’m wishing we had our own! I’m sure when things are back to normal this desire will fade, though.

My other personal challenge is maintaining a sense of rhythm and structure when all the milestones and pivot points of a regular week are gone. I think especially as an autistic person, I struggle significantly with having an uncertain routine. So far I’ve been doing alright with bookending the day – prayer in the morning, reading to the kids while they eat breakfast, and exercising on the stationary bike in the evening while listening to podcasts – but the middle of the day is a great gaping void. And when I think the day is going to have a certain structure but then it doesn’t end up working out, it’s really bad. I suppose if I had to find a silver lining here, it would be both the confirmation that I am autistic and didn’t somehow trick the psychologist as well as the reassurance of God’s faithfulness and grace as I find myself needing Him more.
Related to that last point, the Easter season has been such a gift right now. The daily reminder that Christ is risen, the reaffirmation of the hope and joy to be found in Him, even just the singing of the alleluias – those things help me stave off negative emotions and unhelpful thought patterns. They give me a starting point for seeing joy in each day, for learning to be thankful, and for abiding in hope.
Finally, the sudden burst of warmth has made the garden flourish! The last of the winter beets are rounding out under their thin blanket of soil and the herbs are thick and bushy. The blackberries are ripe, the peaches are blushing, the corn is shooting up, and the beans are filling in around the trellis. I even have some sweet potato and purple basil sprouting up on their own from last summer! This is definitely a joy-bringing aspect of this time as well.

I hope you are all doing well, staying healthy and finding joy, and that you have the support you need right now! I am linking up with Kelly today so head over to check out the rest of the link up!

book review

{book review} marcelo in the real world

Posted on 2020-04-212020-04-03 by kristinabean

Title: Marcelo in the Real World
Author: Francisco X. Stork
Date of Publication: March 2009
Rating: 4 out of 5 stars

Marcelo in the Real World is a coming-of-age story touching on neurodiversity, ableism, racism, family, ethics, religion, sexuality, and love – in short, all the passion and philosophy of a teenager stepping into adulthood as experienced by a young neuroatypical Latino man. While Stork is not, as far as I can determine, neurodivergent himself, I find Marcelo to be relatable and authentic as a neurodivergent character: from his subtle stimming, to his sensory struggles, to his logical rules-based method for deciphering people, to his thoughts on life and faith and God. And, quite satisfyingly, the resolution of his story does not come with a cure or a fix for his differences: just an increased understanding of who he is and a vision for living in the “real world” as someone who doesn’t quite fit.

Continue reading →

autism acceptance month, sqt

{sqt} – autistic #ownvoices fiction

Posted on 2020-04-03 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!

Uncategorized

autism comic

Posted on 2020-03-022020-03-02 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!

musings

thoughts on rest while dealing with a cold

Posted on 2020-02-18 by kristinabean

I’ve been knocked out with a cold since Saturday morning but thanks to President’s Day this was my first day alone with the kids while sick. And… I spent the entire afternoon fighting off a meltdown and trying to help Rondel do the same as he’s also getting sick. Getting to go to work tonight was such a relief – a chance to escape the emotionally charged atmosphere in the house (probably only emotionally charged due to my current mood associations) as well as the constant sensory input coming from three little kids. I was alone, with tasks demanding very little from my overwhelmed socioemotional skill set and utilizing instead the more intellectual and scientific parts of my brain.

It made me realize how much I rely on that balance to give me renewed energy for the daily work of parenting, and how valuable rest – both physical and mental – is for coping with life in a turbulent world. (Work is very definitely restful for me, at least in this season of life). It also made me very thankful that I have this built-in source of margin! It helps me regulate, process, and relax – and in so doing it allows me to care for my family in a more calm and and emotionally available way. And at times like these, when my innate emotional margin is completely used up dealing with sickness, it is particularly helpful.

What are some ways that you expand your margins and give yourself rest, thinking of rest not simply as doing nothing but as creating mental balance or emotional space?

Autistic Behaviours are Human Behaviours

Autistic “challenging” behaviours are not “caused by autism”. They are a very human response to extreme stress. All humans in that kind of stress will exhibit these exact behaviours. Our behaviours mirror our emotions. If we are exhibiting “challenging” behaviours it’s because we are finding something in our lives very challenging. Same as anyone else.

– Autisticzebra, Autistic Behaviours Are Human Behaviours

Please go read the rest of this very excellent post by Autisticzebra. Autism often makes things more challenging – situations that seem normal or positive to a neurotypical may be extremely difficult for us. But the behaviors that don’t make sense to the neurotypical onlooker – the challenging, self-harming, out-of-control behaviors – they may seem a lot more rational if you understand where they are coming from. And this post helps put those behaviors into that much-needed context.