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 musings, quotes

treating autism

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

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

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

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

stims!

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!

Before we began Rondel’s diagnostic process, I had never heard the words “stim” or “stimming” – so I’ll assume it’s new to a lot of you as well.

“When we feel an emotion or a collection of emotions very powerfully, stimming can help us manage these feelings without overloading. Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” – The Stimming Checklist

Essentially, a stim is a behavior that provides sensory, social, or emotional regulation to a person. Some of the most familiar (or stereotyped) stims among autistic people are hand flapping, rocking, and head banging – but to stop at those would be extremely limited and inaccurate. The Stimming Checklist has accumulated over 1400 different stims from user submissions (although some are essentially repeats as people submitted different wordings of the same behavior, there are still a lot), just to give you an idea of the diversity and range of stimming behavior! They also give a more detailed description of what stimming is and why people may stim, including the above quote about stimming for emotional regulation.

IMG_5281
From the Ausome Cork facebook page: 8 Functions of Stimming

My most reliable stim is skin picking. It can be embarrassing at times, since my upper arm is dotted with scars and scabs, but in the moment it is less noticeable than something like hand flapping (or running away screaming, lol), so I keep doing it. The sensation of it helps to alleviate almost any kind of tension, and also helps me stay focused on something if my thoughts are wandering (maybe by occupying the part of my brain that would otherwise be distracting me!). For example, if people around me (or even in a movie) are arguing and saying hurtful things, even if they are sarcastic or joking, I will start to pick to help calm down my physical reaction to the emotional turmoil I’m sensing around me. On the other hand, I’ll also pick if I’m bored and can’t do anything because I’m stuck waiting somewhere.

Hand flapping and deep breaths with loud exhales are stress-reducing in the way that pushing down the valve of a pressure cooker reduces the internal pressure – they cut out a lot of tension very rapidly but in a very dramatic manner – and I tend to only stim that way in the privacy of my own home. In class or other lecture-type environments, I write (notes, thoughts, or the alphabet), calculate irrational square roots by hand, draw geometric designs on grids, play games on my phone or laptop, or else generally become unable to sit still or pay attention due to my mind wandering off into some far off land and my physical tension steadily rising.

While stimming behaviors may appear strange or odd on the surface, therefore, it is important to understand that they can play a significant role in the life of an autistic person, as I am hardly a unique or extreme example. Trying to force someone to stop stimming altogether is going to be harmful in the long run: it will deny them access to some of their coping strategies for sensory overwhelm or emotional stress, and force them to spend significant amounts of energy and focus on holding in their stims at the expense of other things.

“If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?” – Cynthia Kim, Musings of an Aspie

However, not all specific stims are healthy, no matter how helpful they may be in the moment. My skin picking certainly falls into this category, as does any other self-injurious stim. In these cases it is worth the effort to find a replacement stim, if at all possible (I haven’t found one for myself yet), and it is emphatically better to consciously redirect towards a positive replacement stim than to simply try to eliminate the damaging one. Without that deliberate replacement, it is likely that an equally unhealthy stim will take over instead (for example, I tried to stop picking my arm last year and ended up creating sores all over my legs. Not helpful at all, that.) So if I ever figure out a good strategy for finding a replacement and making it stick, I’ll be sure to update you…

Do you stim? What do you do and why? Does someone you know? What do you think about it? It’s ok if it seems weird 🙂 – I sometimes think my own stims are weird even though I know why I do them and how it helps me!

 

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.