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, sqt

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

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

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

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

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

Links for additional reading:

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

Posted in autism acceptance month

autistic inertia

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

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

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

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

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

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

 

Posted in autism acceptance month, information, links

autism acceptance month

Each April is Autism Acceptance Month.

Not, as some groups would put it, Autism Awareness Month. It’s a different perspective, because it’s coming from a different place. The autism awareness campaigns – like the Light It Up Blue campaign from the notorious organization Autism Speaks – tend to originate from medical professionals and non-autistic parents, people who see autism primarily as a disorder that merits pity and needs to be cured. The autism acceptance campaign, on the other hand, originates with autistic self-advocates (specifically the Autistic Self-Advocacy Network): people who understand autism to be a difference rather than a disorder – a difference that gives to us even as it makes certain things more challenging, and a difference that shapes our identities. To those who advocate for acceptance, considering autism to be a disorder and trying to eliminate it feels like a personal offense.

We are here, say the autistic self-advocates, we are autistic, and we have the same rights and humanity as everyone else. Stop trying to make the way we think and feel and act mirror yours; our autistic personhood is just as valid as your neurotypical personhood.

AAMwordcloud3
autism acceptance word cloud from the autism acceptance month website

This year, for the month of April, I have two major goals. First, I am going to spend the month writing about autism from the perspective of neurodiversity and acceptance, both as a (probable/self-diagnosed) autistic adult and as the parent of an autistic child. Second, I am going to pursue an official medical diagnosis for myself (although all the evaluations are in April, I won’t have the final word until May, unfortunately). I hope that you will join me on this journey – that together we can learn more about neurodivergence and how it affects individuals and society, and find ways to accept and love the differences in ourselves and those around us.

I highly, highly recommend that anyone wanting to learn more about autism focus on information from autistic people. Otherwise, it’s as if you’re trying to learn about the African-American cultural experience from a bunch of white authors, or trying to figure out what it feels like to be queer from the observations of the straight/cis community. Non-autistic professionals can give you an understanding of the history of the diagnosis, or the medical definition of the diagnosis, but they cannot tell you what it is like to live as an autistic person. They simply don’t have that inside understanding.

To get you started, here are some of my favorite #actuallyautistic internet presences (some of them are more than just blogs!), in no particular order:

  • Autistic Not Weird, by Chris Bonnello
    • I’ve been following ANW for a long time now, since back when it was simply a blog. Chris Bonnello has a great sense of humor, a lot of stories to share, and an accessible way of explaining technical information. This was one of the first blogs I read that was written by an autistic adult, and finding that I could identify with almost everything he wrote pushed me forward in my own path of self-discovery. The ANW community on Facebook is one of the most inclusive I’ve run across, with autistic individuals and their families asking and answering practical questions honestly and kindly.
  • Suburban Autistics, by Ally Grace
    • I found this blog by searching for gentle parenting tips, actually! Ally Grace and several of her children are autistic, and she writes about parenting in a gentle, accepting, positive way. I am always both inspired and challenged to be a kinder, more compassionate person and parent when I read her work – and to give myself a touch more grace in my own struggles as well. If you are on Facebook, I believe she is a bit more active there than on the blog.
  • Neurocosmopolitanism, by Nick Walker
    • I don’t think this blog is active anymore, but it is foundational in my understanding of neurodivergence. I would quote liberally from his articles except that once I start, it’s hard to stop! So just go and read them in full. Start with Throw Away the Master’s Tools if you really want to understand the mindset behind acceptance as opposed to awareness.
  • The Girl with the Curly Hair, by Alis Rowe
    • This is significantly more than a blog; it is a compendium of resources, especially for autistic women. Honestly, my main interaction with this site has been mediated through Pinterest, where I’ve found so many quotes –  accompanied by the curly-haired girl illustration herself that – resonate with me on a deep level. (In the following quote, keep in mind that in the US the diagnosis of Asperger’s Syndrome has been deprecated and replaced by an autism diagnosis.)
alisrowequote
Quote: ‘Women with Asperger’s Syndrome may be both brilliantly strange and strangely brilliant! We are genuine, truthful, thoughtful and interesting… with unusual problem-solving skills and out of the box thinking styles. We tend to have volatile emotions, quirks, interesting mannerisms and we tend to feel most comfortable and relaxed when we are on our own.’

So for World Autism Awareness Day today, let’s start looking at autism from the perspective of difference rather than disorder, and seek to understand it from the inside out! My challenge for you is to pick one of the websites I shared above and read at least one article from it 🙂 I’d love to hear what you read and anything from it that stood out to you!


all posts in the april autism series will link here after they’re published!

Posted in musings

because it is good to belong somewhere

One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.

To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.

I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.

It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.

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 sqt

{sqt} – why I write about neurodivergence

For this week’s quick takes linkup Kelly wrote about why she and a few other bloggers write about their families and how disability affects them, with some solid insight about the good to be gained from writing and the pitfalls to avoid. I do recommend reading it, especially if you write or are considering writing about your own family! (Key takeaways? Show how the happiness of everyday life is not less because of disability, and don’t overshare about your children’s private issues.) From my perspective, here are several of the reasons that I write as much as I do about my own neurodivergence and Rondel’s autism on this blog (in no particular order).

  1. Writing helps me process life. Since I learned how to write I have consistently found it far easier to coherently express my thoughts in a written format than vocally. My mom and I actually had a journal for writing back and forth to each other when I was around 10 or 11 that we used and that I appreciated a lot! Similarly, my husband and I used Facebook Messenger for most of our serious pre-marital conversations, because the anxiety involved was so much less and the processing time could be longer. Now, I use the blog to help me focus on things I want to remember, organize events as they happen (since I can never remember anything chronological reliably), and fully formulate my thoughts on issues that are important to me.
  2. My son is a human person of innate worth due all the respect that any other person should receive. (Well of course, you should say). But from a lot of the autism rhetoric on the internet, a person could easily come to the conclusion that this is a radical or even untrue statement – and for that reason alone I believe it is essential to write about him and our family in a way that demonstrates his humanity. Some of his actions may not look like what society expects; his developmental timeline may be different than “normal”; and he may struggle with things that most people consider to be trivial inconveniences or perhaps don’t even notice. But those developmental differences do not make him less worthy or less human.
  3. Autistic children grow up to be autistic adults, and they still struggle with things that most people don’t struggle with. So that’s why I write about myself: first so that people can understand why I or other neurodivergent adults may act in certain ways, second so that neurotypical adults don’t trivialize our struggles because they only perceive the slight quirks and oddities that show through our masking, and finally so that younger neurodivergent individuals can see adults like them living and struggling and coping and thriving in the world. We might not be the best at forming in-person communities (and it would be hard anywhere except in a large city anyways), but even just knowing other people like me through the Internet has been hugely encouraging and enlightening; I’d love to be able to extend that gift to someone else.
  4. As a corollary to this, it has been especially difficult for me to find a community of Christian autistic/neurodivergent adults, particularly women. There is one in my small group which is amazing – I don’t recall having had that kind of connection in an adult friendship before – but other than that there are just a couple blogs that’s I’ve found. I would love to both share how I live my faith as a neurodivergent individual and help the church deepen its understanding of neurodivergent individuals, and maybe I can start small here.
  5. Sometimes I find things that I want to share, and the blog is an easier way for me to share them than on Facebook, where it is so easy to hurt feelings. See this link for an example: Ink and Daggers: Small Talk (trigger warnings for ableism, child abuse, and language).
  6. I can’t think fast enough in conversation to discuss things that are close to my heart. I struggle to read my companion’s reactions, to gauge where next to move the discussion, to know how to change the subject without giving them my agreement, to be passionate without getting emotional and losing the words I need most. I wish I could tell everyone about neurodivergence, to promote acceptance instead of toxic awareness, to advocate for myself and Rondel and other people who are hurt daily by the ableist assumption that they are less because they are not normal, to help people to understand instead of pathologize autistic behavior. But I just cannot manage all the little things required by conversation while a high-stakes, emotionally-charged issue is the topic; it never ends well. Instead I write, and maybe my words will reach eyes that need to read them instead of ears that need to hear them.
  7. Finally, this story is all-too-common among people whose differences were seen purely as deficits, whose superficial abnormalities were trained out of them but who were never given coping skills for their deeper struggles, who were only ever valued for appearing normal and never praised for their unique abilities. This is not my story, because I was blessed with parents who always sought to understand and support, but it is a story I have read time and time again in the online adult autistic community. I write to try to create, with my words, a world in which this is not the norm for autistic children. (Is it the norm, you ask? Surely it can’t be that bad? Well, it is the result of therapeutic practices condoned by major groups such as Autism Speaks and the Judge Rotenberg Center, so it is definitely mainstream. I am hoping it is becoming less common, of course.) I write also to share those more painful and disturbing stories – and the principles gleaned from them – so that fewer people can say, “oh, I didn’t know!” as an excuse for their inaction and indifference.