Posted in autism acceptance month, book review

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

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 musings, sqt

{sqt} – like a child at rest

Compared to the scope of a pandemic, my life feels quite small. Not necessarily insignificant, but most definitely small: myself just one person, my family just one little cluster of people amidst the billions all swept up in a single massive crisis. It is the kind of smallness that can make someone feel helpless and afraid, unsure of how to protect themselves and their loved ones from something so big and so out of their control; it is the kind of littleness that can leave us cowering and vulnerable against a greater force than we can hope to conquer.

But tonight, as I put my daughter to bed, she curled herself up against my side, tucked under my arm, and I thought that the smallness of fear or helplessness is not the only kind of smallness in this world. There is also the smallness of restful trust: the smallness of a little child confident in their parents’ love, to whom the world may be very big and scary indeed but for whom that parent is a shield and refuge and source of strength. This is the smallness of a child who is hurt, or sad, or scared, or angry, but whose tears fade in the arms of their mother or father.

The Psalmist wrote that,

"Truly I have set my soul
in silence and peace.
As a child has rest in its mother's arms,
even so my soul."
(Psalm 131)

Against the swirling unknown threats of a pandemic, against the overwhelming storm of uncertainty and anxiety that is threading its way around the world, we are each on our own very small indeed, like a young child trying to fend for themselves. But where I find peace in this time is in acknowledging my own smallness and staying close by God my Father, who is quite the opposite of small and helpless, and in whose unconditional love I can be utterly confident. I do not need to be my own strong tower in the hurricane; he offers his strength so that in him I may have the peace of a child comforted in their mother’s arms.

My view biking home from work the other day! (Panoramas are tricky to capture in the rain on a bike…) I love the promise of the rainbow, which I believe can be taken figuratively: that God will not prove faithless to his people, but will be with them through the storms and floods of life. Sometimes the things that make sense from an eternal perspective don’t make sense from our earthly perspective, but I choose to trust in his faithfulness.

Visit Kelly at This Ain’t the Lyceum for the rest of this week’s linkup! She didn’t do 7 takes either this week so I don’t feel too guilty about just sharing one thought 🙂

Posted in sqt

{sqt} – disability rights, epidemics, communication, love, and lemons

  1. Some good news this week – the FDA has banned the electric shock devices used by the Judge Rotenberg center to control disabled (primarily autistic) patients. From the ACLU statement in response to the ban:

    “Using what are essentially human cattle prods to shock people with disabilities into compliance is simply barbaric. For over 40 years, the disability rights movement has fought to ban the use of abusive ‘behavioral treatment’ methods such as these ESDs. The FDA’s decision today banning their use should be seen as a necessary and important first step to securing a broader prohibition on the use of aversive interventions.
    “People with disabilities deserve the right to be supported with dignity and respect, and there are no circumstances under which they should be subjected to pain as a means of behavior modification.”
    – Susan Mizner, director of the ACLU’s Disability Rights Program
  1. Some not-so-good news is that the novel coronavirus COVID-19 does seem to be of potentially greater concern than I originally thought (in line with the flu in terms of transmission rate and severity, far lower in total number of cases so far, but still concerning to researchers and health care workers because it is an unknown agent). In response to that, one of the labs we frequently work with at the university is optimizing protocols for high-throughput diagnosis and training people to run those protocols; if an emergency situation does occur where the load of potential cases is very high, they’ll be equipped to run 24/7 and process 1000-3000 tests a day. (I say “they”, but I’m hoping to run through the training myself so I can be part of the public health response if the epidemic becomes a serious issue locally. I guess I’m nerdy enough that the opportunity to be involved with a novel virus on even a small scale is just purely exciting to me 😛 )
  1. Coming down to a more personal scale, communication and relationships are so hard. Even when two people are trying as hard as they can, misunderstandings can happen and feelings can be hurt and it’s just all around miserable – so much so that even knowing how a good conversation about something meaningful can fill up my heart like food and drink, it’s tempting to just not even try sometimes. But isolating myself doesn’t lead to health, or happiness, or holiness; it leads to bitterness and selfishness and despair. My sister shared a quote with me today that speaks to this, and of far more than this – of the value and even necessity of pursuing relationship in a self-giving way, of staying alive and invested and connected not for your own sake but that you might in so doing pour out your life for the needs of others and open yourself to be so poured into by others (and I don’t have access to the original formatting of the quote, unfortunately, since that can be significant with poetry):
"I don't want to feel better; I want to know better.
I should have known that God is not in the meal
but in the sharing of the meal.
I should have told you that holiness resides in needing each other,
in acts of survival made generous."
- Julian K. Jarboe, "Everyone on the Moon is Essential Personnel"
  1. Speaking of powerful quotes from books, I came across this one and realized that far too often I am impatient with and even contemptuous of weakness – starting with myself, but sadly spreading out to those around me as well. I do not often respond to my own struggles with compassion and grace, and that attitude of harsh, high standards can carry over into my interactions with other people. Having had the issue brought to my attention, I’m trying to be extra intentional about cultivating a spirit of love and gentleness instead: to offer open arms and a listening ear instead of an eye roll or an “I told you so”; to wait calmly for someone to process and express themselves instead of letting my attention drift away from them in impatience or disrespect; to make space for struggle and failure and fear and meet people where they are instead of expecting them to succeed in a way or time that’s convenient for me.

    “No one is of the Spirit of Christ but he that has the utmost compassion for sinners. Nor is there any greater sign of your own perfection than you find yourself all love and compassion toward them that are very weak and defective. And on the other hand, you have never less reason to be pleased with yourself than when you find yourself most angry and offended at the behavior of others.”
    – William Law, cited in Sacred Marriage by Gary Thomas
  1. One of the great blessings of cultivating this gentleness and patience is seeing the happiness and peace it gives to those around you. I think as a parent of small children it’s easier to see things like that – young children are both more sensitive to their parents’ attitudes and more expressive of their own feelings. For example, Rondel has been working really hard on riding his bike the past few weeks. He has training wheels, but he still feels very panicky about balancing, steering, and just generally maintaining control of the bike, especially at faster speeds. It is so easy to become frustrated when he bikes at a slow walking speed – Limerick racing ahead then having to wait for him to catch up – particularly because he doesn’t look anxious at that speed. Some part of my mimd interprets his actions as laziness or an unwillingness to try when really they stem from anxiety and poor motor skills, and my resulting impatience just makes him feel worse. But when I remember to re-evaluate in terms of gentleness and grace, I can see the anxiety and try to help him work through that root problem so that biking can be something fun and energizing for him like it is for his siblings.
  1. Another thing that I’m learning as a parent is how little control we really have in the interests our children develop. Aubade wears princess dresses as often as she can, claps with delight at the thought of going to a shoe store, revels in sparkles and stick-on earrings, and pretends every playhouse is a “princess house.” Just. What. I have no words. Aside from having to tell someone with no concept of monetary value that she can’t have all the shoes she desires, though, it’s actually pretty fun 🙂
  1. Finally, I got a bag of lemons from my mom and need to use them up this weekend! I’m definitely going to make a jar of preserved lemons, now that I know I like them and won’t wait six months before breaking into them, as the batch from last year was beginning to get mushy (still tasted good though). I’m also contemplating making a jar of lemon marmalade, but I’m debating whether or not to add some sort of accent flavor to it. I could go a slightly savory route with rosemary (I made a rosemary and lemon shortbread last week that I loved, and this would be a similar flavor profile), or more Middle Eastern with cardamom (my favorite spice of all time). Or I could keep it straight lemon, simple and bright. Any thoughts?

Head over to This Ain’t the Lyceum for the rest of the Seven Quick Takes link up! For fellow homeschoolers, there were some helpful/thought-provoking posts on that topic this week that I found encouraging 🙂

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

response to a sermon on worship

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

dealing with childhood anxiety

When a parent realizes their child is struggling with anxiety, there is most likely going to be both sadness and relief: because while no one wants someone they love to live with high levels of anxiety, knowledge is much more helpful than ignorance.

With young children who don’t have the vocabulary to express their feelings verbally, it can be difficult to correctly read their behavior to see through to the underlying anxiety. Maybe a child is just sensitive, or reserved, or organized – in moderation, those are all perfectly normal personality traits, after all, and can appear superficially similar to symptoms of anxiety. And a lot of parents just want their kids to be normal and healthy and happy, and don’t want to admit that something might be wrong. But if the anxiety is there and not seen, it can worsen until the symptoms spiral out of control, into extreme clinginess, or irrational aggression, or refusal to engage in everyday activities. (Here is a helpful list of potential signs of anxiety in very young children ).

With Limerick, I had concerns about potential anxiety issues from before he was two years old. He would notice when lightbulbs were blown (say, at a restaurant or at my parents’ house) and not be able to relax until they were fixed (so he’d have trouble eating if we were out, and would pester my dad about it until he replaced the broken bulb if we were at their house) – and that could just be a desire for things to be the way they ought to be, or it could be more. He always wanted me to sleep with him, and would act very scared if I were not there or if the room were too dark – which is fairly normal at two, but became less so as he grew. While Rondel and Aubade would want to go places, even if just to run errands, Limerick wanted to stay in the house – and I thought, maybe he is just a homebody and a quiet kid. But I knew enough to keep my eyes open, at least.

And then recently Limerick started struggling in class at church, needing help to stay focused and calm (tracing numbers on a sensory pillow helped, but he would tell the teachers he just wanted me). At home, I noticed in increase in angry and aggressive behavior: angry words, threatening gestures, and actual scratching, kicking, and even biting – and Limerick was never a biter, even as a baby. Talking to him about anger didn’t help the way it has helped Rondel, and I gradually realized that his problem didn’t lie in controlling anger, but in controlling anxiety. His brain, for whatever reason, felt threatened and unsafe, and he reacted with out-of-control aggressive behavior that looked angry from the outside.

Now that I realize what’s actually going on, I have a lot more hope that I’ll be able to help Limerick, both to reduce the behavior and to help him stabilize and calm down internally. It’s already started to be helpful, actually, just in the past few days, to have a more accurate perspective and a different toolbox of strategies to try 🙂 When Rondel or Aubade get angry or want to state their opinions, they get loud, and Limerick reacts quickly and violently, so I’ve been stepping in right away, telling Limerick that he’s safe, giving him words to use to talk through the interaction, and coaching his siblings on how they can help defuse the situation as well (mostly be speaking more quietly, and by shutting up long enough to hear what Limerick is trying to say to them). When we needed to go to the grocery store and Limerick was starting to get physical with his refusal, I took some time to talk with him and found out that the store is pretty overstimulating for him (noise, bright light, undefined length of time, etc.), and I let him bring the iPad so he could focus on his current special interest (the Solar System!) when things felt overwhelming. It was the most peaceful errand we’d had in a while.

I found this website to be quite helpful with regards to anxiety-reducing strategies – it’s where I got the idea to use his love for the Solar System to help counteract the anxiety caused by the grocery store, actually! I appreciate that it has multiple ideas, since it can be unhelpful to be too dependent on a single coping mechanism and since some strategies are not ideal for certain situations.

I’m not surprised that at least one of my children has anxiety to the point that it interferes with their everyday life – it’s a pretty common thing in my family. But I am hopeful that by identifying it so early in Limerick’s life, we can help make sure that the neural pathways to address, calm, and stabilize are just as tightly woven into his brain as the pathway of anxiety. It’s much harder to rewire those networks after years of traveling down them in every tense or emotional moment, when you don’t realize the anxiety is there until after you’ve spent your whole childhood being controlled by it. Limerick doesn’t have to take that road, because his anxiety is no longer a hidden or ignored reality, but a present issue that he can learn to cope with in healthy ways from the beginning.

Posted in autism acceptance month, sqt

autism and faith

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

seven challenges of autism

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

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

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

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

cureforautismsurveygraph

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

Posted in musings

stimming for joy

I stimmed today, for the pure joy of it.

I shook my hands back and forth like there was a vibrato in my wrists; I made waves through the air like the swirling lines of a dancing ribbon; I watched my fingers sparkle against the sky.

We were at the park; a storm was rolling in and the air was cool and crisp, with a bite to the wind. I was pushing Aubade and Limerick on the swings, feeling like I could fly with them, happy in the weather and the hours we’d been at the park already and the laughter bubbling from them as they swung. I would run towards them as they flew backwards, then dart backwards out of the way just before they could swing forwards and crash into me, and they would laugh so hard they could hardly catch a breath. Aubade would crow, “Three!” and I would push her three times, each one bigger than the last, so the third push would make her erupt with glee. And as the happiness ran through me it ran to my hands, and I chose to let it be instead of shutting it down, and I found as my hands danced in response to my happiness they also made it grow, until I was as completely blissful as I have ever been as far back as I can remember.

Normally, I have my body on some sort of lockdown – I can feel an impulse to move and then before I even have time to process it there is a counter signal to hold still. Normally, the only things that get through this lockdown are the stims that I need to cope with my anxiety or the stims that occur when I’m thinking hard enough about something else that I don’t notice what my body is doing. In other words, I let my body process and express my negative or neutral emotional states (at least to some extent, because I have learned that it is important for my mental health), but I prevent it from feeling my joy.

I’m starting to think, now, that the stimming of my happiness may also be important for my mental health. I have walked the thought paths of depression for so many years, always feeling inadequate, always feeling like I was carrying a nameless secret that would make people reject me if they found out, always shutting down my happiness from reaching my body so that even the moments of the most joy and beauty were tinged with sorrow. But here my body is ready and waiting to give to me the gift of happiness – of taking my happiness and escalating it, elevating it, prolonging it – able to protect me from the darkness of those roads, if only I am willing to let it do so.

I stimmed today, for the pure joy of it. I hope I can feel free and confident enough to do it again.

Posted in family life, musings

fear of change

After eight years of working in a genomics research center, I’ll be transitioning to being a stay-at-home parent a week from now. Technically I’ll be working eight hours a week, in a sort of consultant role, which will keep me connected to the science – but it will still be a big change. It’s what I’ve been wanting ever since Rondel was born almost four years ago – but as it approaches, I find myself becoming more and more anxious.

I like my job, and I am good at my job. My supervisor respects me and my opinions; the researchers who rely on the services our facility provides respect me and my scientific knowledge and experience. I know what types of problems are most likely to arise, and I have tools and strategies for troubleshooting them. And I know that if I put in time, effort, and energy, I will have a successful outcome.

To be totally honest, I really like having the respect of other professionals whose opinion I value and who do innovative and important research. It gives me self-confidence: I may be a complete wreck if I have to call my doctor to schedule an appointment, but when I sit down with a researcher to discuss their experiment and figure out the best plan for them to take moving forward, I am completely at ease. It also gives me a sense of identity and self-definition: when acquaintances ask what I do, I can tell them about the science and feel that I’m doing something of worth, something that uses my talents and gifts, something beyond just staying at home and cleaning and cooking like any other person could do.

At the heart of my nervousness about the transition, then, I think, is a fear of losing that respect and identity – of becoming part of the crowd, no one in particular, no one with any valuable skills or gifts to offer my community. When I spend time with other moms, I feel so inadequate in the areas they are gifted in: my home is rarely clean, laundry and meals happen on an as-needed basis rather than with planning, small talk eludes me, playdates terrify me, schedules and extra activities overwhelm me, my children are dirty and wild. My mind is usually lost in a book, or an idea, or a project, instead of focusing on the people around me. I say nothing and feel isolated, or I say too much and still never manage to connect with anyone else. I simply don’t have the skills that these other women have, and without them, I’m not sure where I can fit in or belong in the mom world (especially the homeschool mom world… those women are so organized that I give up just at the thought of trying to be like them).

In the workforce, in academia, where everyone is a bit weird and everyone is valued simply for the expertise they offer, I knew where I fit in and I knew how I could flourish.

In this new world, I’m afraid I won’t ever be able to flourish – and that in my lack of flourishing, I will stunt my children’s future as well.

I’m not going to let my fears make a decision for me, when I believe on principle that a self-directed education is ideal for children, and when I observe pragmatically the stress that a classroom environment would add to our family life. I’m going to choose to let my love for my family be the motivating factor here instead!

But I’m still afraid.