Posted in musings

toward love, toward justice

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.

Posted in musings

books

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 sqt

finding joy in the little things

  1. 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!)
  1. 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!
  1. 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.
  2. 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.
  1. 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.
  2. 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.
  3. 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!

Posted in book review

{book review} marcelo in the real world

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 “{book review} marcelo in the real world”
Posted in autism acceptance month, sqt

{sqt} – autistic #ownvoices fiction

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

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 musings

thoughts on rest while dealing with a cold

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.

Posted in information, sqt

{sqt} – internalized ableism

I’m joining the quick takes link-up today at This Ain’t The Lyceum with a rather more serious topic than normal. Head over there for the rest of the regular varied line-up.

Disability is innately challenging in various ways (hence the term disability), but it is also socially challenging because the surrounding culture is not designed to accommodate disability, typically misunderstands, and frequently actively stigmatizes it. When a person in a wheelchair can’t navigate safely down the sidewalk because someone left one of those electric rentable scooters lying across the width of it, for example, that is a challenge posed social ignorance and carelessness, not an inherent challenge of the disability. When people assume that a disabled person’s life will be less meaningful, less joyful, or less worthy, just because of the disability, that stigma and misunderstanding add a significant challenge that is not actually part of the disability itself: the burden of proving oneself to the community instead of having one’s potential and value automatically acknowledged. And in the face of that assumption, repeated over and over again, the disabled person may even begin to believe it themselves, in what is called internalized ableism.

I can really only speak for myself and the disability I know well, autism. But for me, internalized ableism is:

  1. …scratching my arms till they bleed because it’s more subtle and socially acceptable than flapping my hands in the air and I really just don’t want anyone to notice that I’m different and struggling here, please. (Just realizing this and giving myself permission to flap and stim in other more obvious ways has reduced my self-injurious stimming a lot, actually.)
  2. …laughing at everything that is probably a joke so that I’m not the clueless person who doesn’t get cultural humor. (I laugh when I’m nervous or overwhelmed too. I hate this. I hate that my emotional responses don’t match up to what they “should” be and I have hated it ever since an adult got angry with me as a kid for laughing in an “inappropriate” setting. Internalized ableism is often learned through emotionally significant childhood events; it often speaks to the heart with cruel, cutting hate.)
  3. …acting like I know things, even if I’m not totally sure, if it seems like everyone else knows already – only admitting ignorance if someone else does, because then I’m not the weird one who might not be worth bothering with.
  4. …believing I can’t serve God in any meaningful way because I’m too anxious to build relationships and share the Gospel with my neighbors/coworkers/homeless people/etc.
  5. …trying to get my kids to act “normal” instead of helping them live fully into the way God made them, disability and all, because I secretly (subconsciously?) think displaying their disability will hurt their chances of friendship, community, inclusion, and happiness.
Limerick standing at the edge of a lake, arms raised mid-flap. I never want him to think he has to stop his excited flapping to fit in and make friends. I never want to cut out his natural and beautiful expression of happiness, and in so doing damage the happiness itself. So why do I try so hard to do that to myself?
  1. …doing everything on my own without asking for help, because I think asking for help for disability-related reasons either means I’m a useless burden on the relationship or lazy and immature and relying on my disability as an excuse.
  2. …assuming that the people I do rely on (particularly my husband, at this season of life) resent me or see me as a burden, or would do so if they understood the reality of my disability. I felt this years before I had a diagnosis: I knew that I was different, that I didn’t process things “normally”; that I had struggles no one else I knew had; and I thought this made me deficient and broken and that anyone who really knew me would stop loving me because it would be too much work. And that is just with Level 1 Autism. I can only imagine how internalized ableism, if not actively combatted, could bring down smothering waves of anxiety and depression on someone whose support needs are higher, either physically or emotionally.

In short – internalized ableism can rob the disabled person of joy, shut down their authentic self-expression, replace their faith and hope with fear and despair, and reduce the blessing and the gift they can be to the communities they are a part of. I don’t have a great solution for eradicating it, and I think it can only be done hand-in-hand with eliminating more generalized ableism in society – disabled people are going to pick up on the attitudes others have towards them, and especially as children can easily internalize those attitudes.

The following chart is, however, a well-written, sensitive, and helpful guide for evaluating your own attitudes toward disability. It’s aimed towards the non-disabled reader, but I honestly found it quite helpful in unearthing my own internalized and self-directed ableism as well.

Where on the chart do you see yourself? What has led you to where you are now in your understanding of disability, in either yourself or in others?

Has internalized ableism been a part of your life? If so, what does it look like for you? How do you move past ableism and learn to walk with joy in the fullness of who you are as a disabled person, beautifully and wonderfully made by a good and loving God?

Posted in musings, quotes

treating autism

“The absence of effective treatments for manic-depressive illness in earlier times did not mean that these patients were not treated. They were treated with all sorts of substances and procedures from ancient times onward. It’s just that none of these treatments worked, and most were harmful.” – Walter A. Brown, Lithium (emphasis added)

When I came across this quote I thought instantly of modern treatments for autism – not the few designed to help an autistic individual learn to cope with the neurotypical world, but those that claim to cure the condition. Even the most mainstream behavioral therapy is concerning (particularly to autistic adults who endured it as a child), and desperate parents who can’t handle having an autistic child try many stranger and more dangerous “treatments.” Different restrictive or elimination diets are supposed to reduce the behavioral symptoms of autism, according to parental observations; given the oral and textural sensitivities of many autistic people, those diets are likely to become even more restricted to the point of being unbalanced, or very costly for the parents (and objective, blinded research observations show no difference). Parents may choose not to vaccinate to prevent autism, and instead create opportunities for potentially deadly preventable diseases to flourish. And one has only to read about the “bleach cure” to see how supposed cures can cross the line from unwise to abusive.

Autism may not even be curable. It’s highly unlikely a single compound will be found that renders the autistic mind essentially neurotypical, like lithium can regulate and even prevent the mood swings of bipolar disorder. And yet so many people invest so much time, energy, and money into making autistic people act like and think like neurotypical people – even when those efforts are harmful to the autistic people they claim they want to help. It’s like forcing deaf children to speak orally and lip read instead of encouraging sign language, or shaming a wheelchair user for not trying harder to stand and walk. Instead of hurting autistic children to try to mold them into conformity with some neurotypical standard they can never completely reach, support them by making the world more aware and accepting of neurodiversity. Help them develop social skills, adaptive and pragmatic skills, and language skills without trying to change the core of who they are, and learn to see each child for the unique and beautiful person that they are, needs and struggles and gifts all bundled up together.