social anxiety – little thoughts

socialization and social distancing

Posted on 2020-05-19 by kristinabean

As a homeschool mom with autism and social anxiety, some of my greatest parenting worries revolve around social skill development – making friends, navigating a variety of social situations, participating in classes and activities with other people, and so on. I worry that I’m avoiding things that are beneficial for the kids because of my own anxiety; I worry that they aren’t going to be able to make close friends and have the incredible blessing of loyal and persistent friendship; I worry that they’re doomed to be awkward and lonely because of me; I worry that I’m not doing enough to help them engage with other people and become familiar with social norms.

But now, in this season, all that weight is temporarily lifted: because everyone is supposed to be at home, and all the classes and activities are shut down anyways. It’s such a relief not to have those worries pressing down on me! And it is so beautiful, in a quiet and peaceful way, to be able to devote this time to cultivating our own family relationships and creating an atmosphere of love and contentment in our own home, without the constant nagging voice whispering that I should be doing something more, something else, something better.

I’m not sure how I’m going to phase back into social endeavors over the next few months. My default preference is to stay home with occasional trips to parks, pools, and libraries; my default inner response is that my default preference should generally be overruled as being most likely defective in some way. (Obviously this is a cause of some internal tension…). But I hope that as the social acceptability of outings and personal interaction increases, I am able to remember the goodness and value of time spent at home as a family and not automatically bow to the cultural pressure that says more (activities, acquaintances, experiences, etc.) is necessarily better. I hope that I will be able to find the path that is best for our family – with all of our neurological differences – instead of trying to fit someone else’s notion of what we should be doing or aiming for.

musings

response to a sermon on worship

Posted on 2020-01-192020-01-19 by kristinabean

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.

musings

accepting autism when I want to be normal

Posted on 2018-08-062018-08-06 by kristinabean

I remember the first time I revealed my depression to another person, and the first time I admitted that I had wanted to commit suicide. It’s not an easy thing to be open about; it’s shameful, and dark, and has the potential to hurt the person you’re talking to quite a bit (especially if they knew you when you were going through it and didn’t open up to them until years later). I’ve found a way to accept it as a part of my story and talk about it now, though, and I hope when I talk about it that I can encourage others who experience it. I have a mental illness, I can say, without being ashamed or guilty. I have been in these dark valleys, and heard these poisoned voices, and felt the dank stagnant breath of despair on my face. If you are there, I can say, where hope seems entirely absent and all light is lost, where you are lost in a pathless wilderness and the very thought of finding a way out seems pointless, I have been there too, and I am a witness that it is possible to return to the land of the living.

Autism has been a more difficult name to claim for myself. While I don’t have a medical diagnosis, it’s not doubt about the validity of the label that stops me; I can see every symptom in my autistic son mirrored in myself, I score well above the cutoff for every ASD questionnaire I’ve ever taken, and it’s evident to others to the point that my husband laughed at me when I told him I wasn’t sure if I could be autistic myself.

Instead, I think what makes it difficult for me is the admission, in accepting this diagnosis, that I may struggle with certain things for the rest of my life without a “fix.” That some of the aspects of myself I’ve always hated, some of the traits I’ve never accepted, are part of my neurology that will never go away. I can take a pill to shut out the blackness of my depression; there is no pill that will help me fit in with a group, or know how to move my face the right way when I listening to someone talk, or recognize when a friend is being sarcastic and when they’re being serious. I can go to a therapist to talk through unhelpful thought patterns and try to replace them with healthy and positive ones so that a depressive trigger won’t need to set off a ruminative episode of self-hatred; I can’t go to a therapist to talk away the irritability caused by spending all day with three kids whose normal play and conversation feels like an assault of noise, or the emotional breakdown induced by a last-minute schedule change, or the heights of anxiety scaled every time a new event or social appointment is upcoming. I mean, a therapist could potentially help me find ways to cope with those physical and emotional reactions – but they are still always going to be there.

As we’ve gone through the process of Rondel’s diagnosis and my accompanying self-discovery, I’ve read and read blogs and articles from the #actuallyautistic community – I’ve sought to have my understanding shaped by the words of autistic adults and self-advocates. So I know that autism is just a different wiring, a different way of perceiving the world and being in the world. I know that very often it is social norms and expectations that make autism difficult, not autism itself – that is, the difficulties do not exist because autism is bad, but because it is different in a world not designed to accommodate differences. I love that autism has given me a mind like a database and an unfailing eye for patterns. I think I can give autism some credit for saving me from the girl drama of middle school and high school, for giving me dedicated and focused attention on things of interest and importance to me, for helping me to be an honest and trustworthy person, for developing my (often repetitive) love of books and reading.

But sometimes it is just hard. I don’t want to be a different person, but sometimes I’d love to be part of a conversation without constantly having to evaluate and compare my responses with the responses of the other people involved, without having to laugh at a joke even if I don’t get it at all, without having to guess whether a statement was meant to be funny or sarcastic or not. Sometimes I’d like to be invited when church friends or coworkers have a BBQ or a game night – and sometimes I’d like to receive an invitation with casual nonchalance instead of panicked uncertainty. Sometimes? – I wish I could actually be normal instead of just pretending to try to fit in.

violet_incredibles — “Normal? What does anyone in this family know about normal? […] We act normal, Mom, I want to be normal!” – Violet Parr, *Incredibles*

But maybe it is harder to try to be someone I’m not, and waste my life wishing I were that other, neurotypical, person, than learning to accept and embrace who I am, struggles and all. Maybe it is harder, in the long run, to wear a disguise every day of my life and pretend that I never need help or support. I just know that right now I’m still too scared to take off that mask.

family life, musings

fear of change

Posted on 2018-04-132018-04-12 by kristinabean

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.

family life

meltdowns

Posted on 2018-02-11 by kristinabean

People are hard for me.

Last weekend was filled with people – a water system sales guy came over right after work on Friday, we had our church small group on Saturday morning, I took the kids to a park Saturday afternoon, we went to church Sunday morning, and we visited my parents Sunday afternoon. So – a complete stranger in my house for several hours, and a crowded, noisy, open-plan park, on top of a weekend already social-heavy, with the looming threat of preparing for the babysitter to come Monday morning, was not a good situation.

Unexpected changes of routine are also hard for me.

Last weekend had a lot of those also. I had hoped to celebrate Candlemas with the boys on Friday after work by melting some beeswax and making earth candles in the planter out front (I had even managed to find my old candle-making supplies from high school!). But then my husband made the appointment with the water system guy (for the promise of a Home Depot gift card, which is always useful), which started 30 minutes earlier than I had thought and went considerably longer than I had expected. So because of a misunderstanding about the start time I didn’t get home until shortly after he arrived, meaning my normal coming-home rituals and reconnection with the kids were hampered; the length of time he stayed meant we didn’t get to make candles and didn’t even get to have time together as a family until dinner (which I had to throw together last minute as soon as the sales guy left).

In addition to that, I forgot how crowded the parks around here are on Saturdays this time of year, and this was a new park for us. That in itself was stressful, because we didn’t have a routine for where we would go first, what we would do next, etc., and what favorite corners we would end up in, and it is hard to develop those routines when there are so many other people around. But it became exponentially more stressful when Rondel didn’t stay put while I maneuvered the stroller around an awkward spot, and wandered off into the crowd. Those 5-10 minutes before I found him (ensconced in the arms of a mother with an older daughter, who had come across him panicking and offered to help him) were some of the worst I’ve ever lived through, as I’m sure any parent would agree!

Then, Limerick had a low fever and runny nose Saturday night/Sunday morning, so my husband stayed home with him while I took the other two to church by myself – which was not really that stressful, but it did change things up and force me to make a lot of logistical/efficiency decisions that I don’t normally need to. Not a big deal in itself, but not ideal after the two days prior.

So… I crashed, Sunday night. As in, I laid myself down on the bed after dinner and cried, leaving everyone else to fend for themselves. I had spent all my energy on small talk, relationships, social navigation, people in all their myriad forms, and I had none left to craft the semblance of “engaged parent” for even the remaining hour or two till bedtime.

We hear/talk a lot about children having meltdowns – how to help them, how to distinguish meltdowns from tantrums, how to prevent meltdowns from happening in the first place – but we seem to think that once someone is an adult, they’ve somehow managed to outgrow them. Well, adults can still be introverted, socially anxious, and sensitive to sensory and emotional stimuli. We can still push ourselves too far. We can still collapse, now, just like we did when we were children – and the best way to help us is with space, rest, patience, and gentleness.

(Protip: it is not helpful, in the moment where a meltdown is happening, to try to identify a specific trigger and explain all the ways that trigger is really insignificant or fixable and therefore unworthy of causing said meltdown. Did you notice how many things I mentioned in this post that contributed to my meltdown? And yet the apparent in-the-moment trigger was a whiny baby during dinner. When someone is emotionally collapsing and feeling completely overwhelmed, they aren’t going to be able to give you the blow-by-blow account of the multiple days’ events that led up to the meltdown.)

(Another protip: It is also not helpful, if you see a person supporting someone else through a meltdown, to start talking to the support person about how you don’t understand what’s going on and really don’t know what to do, with a shocked, confused, and/or repulsed look on your face. The support person is busy taking care of someone in clear emotional/sensory need; they most likely do not have the time or bandwidth to simultaneously coach you through the ins and outs of what a meltdown is, why this particular individual is experiencing one, and how he/she prefers to be assisted through it. If you want to learn, bring it up another time. But in the moment, shut up and give the individual some space and privacy unless they indicate otherwise.)

Things to remember:

I (or my child) am not necessarily melting down because I dislike you, the people in my immediate vicinity. In my experience, meltdowns occur more around trusted friends and family.
I (or my child) am most likely not melting down because of something you did personally, but because of some environmental factor pushing us over the edge. This could include:
1. Physical discomfort (itchy clothes, hot/cold feelings, allergies, hunger, fatigue, etc.)
2. Sensory overload (large groups of people, loud noises, irritating noises, bright lights, strong/unpleasant/unusual smells, etc.)
3. Anxiety (crowds, unfamiliar locations, unexpected changes to routine, uncertainty with how to navigate the social terrain, etc.)
I (or my child) would very much rather not be melting down, especially in front of you, and are trying our hardest to contain, control, and calm ourselves.
1. For example, Rondel, today, when I asked him to try communicating without screaming, told me that screaming was the only way he could tell me how he felt. This statement is not always true of him – but in that moment, with the emotional capacity available to him in his meltdown, it was true, and I needed that reminder.
I (or my child) would appreciate it if you could minimize reference to meltdowns and welcome us back with open arms when we are ready to rejoin you.
1. If you help us avoid triggers, pace ourselves, and prevent collapse – without making us feel like incompetent and defective human beings by snide/cutting remarks or tones – that would be amazing. That would feel like full and complete acceptance and love. But I understand how hard that is in an ableist culture. It is still hard for me not to address myself with negative and shaming thoughts following a meltdown, given how much our society values self-control, self-sufficiency, and outward appearances. So I don’t expect otherwise from you – but if you can consistently provide otherwise, you will become one of the few people I implicitly trust, and around whom I can step out from behind my layers and facades.

Meltdowns happen. Rondel had one just today, victim to another over-scheduled weekend (which was partly my fault, and I feel awful about it). We can try to suppress them with feelings of shame, isolating the individual for their socially inappropriate behavior, or we can support the individual through them, and learn from them so that we can be better prepared for the future. I know which choice I’d rather make – for myself, and for my children.

family life

Michaelmas 2017

Posted on 2017-10-01 by kristinabean

This year, for the first time, our family celebrated Michaelmas – a traditional holiday in both the Catholic church and the Waldorf educational philosophy, honoring the angels (the name comes from the angel Michael) and emboldening us to fight against evil in our world and our own hearts.

Michael is often portrayed in religious art as slaying a dragon (representative of Satan), as he is considered to have led the armies of angels against the devil, casting them out of heaven. Going strictly from Biblical texts, there is also Gabriel’s message to Daniel, in which he says that he has been delayed because he was fighting against the demonic powers in Persia and had to have help from Michael to get past that barricade to Daniel. In either case, from the little that is said about the angel Michael it appears that he is a mighty spiritual warrior, and one whose strength comes from God and is without arrogance or pride (the very name Michael means “who is like God?” – signifying rhetorically that no matter how great of a warrior and leader he is, even then he is not like God, not on the same level as God. Michael stands for exactly the opposite of the devil’s error of pride in believing he could actually be like God, an equal in power and worth.)

So for Michaelmas, the celebratory ideas tend to center around this theme of fighting dragons: in a more literal sense for the younger set, and in a more metaphorical sense as well for more application 😉 We didn’t do much; I was going to plan a whole party and invite other families, but I couldn’t get past my social anxiety in time, so it was just us. Fortunately, however, I was able to make a dragon costume for my brother and some quick “swords” for the boys, so they could fight away a dragon in honor of the day (just like Michael! With the power of God! I’m not sure that those connections were made though…)

I made the mask using a template I bought from Wintercroft on Etsy, from card stock, and threw together the cape at the last minute from a curtain left behind by the previous owners of our previous house (I’m a bit of a hoarder when it comes to fabric… but see, you never know when it might be useful!)

The swords were made from pool noodles, cut in thirds; the hilts were felt circles with an X cut in the center for the noodle to slide through.

Rondel jumped into the fray instantly, laughing from the excitement of battle, ferociously attacking the dragon as it roared and advanced and battered him with its scaly wings and fiery breath:

Limerick stood back and observed for a while, but when the dragon disarmed Rondel he began to fight wholeheartedly, keeping the dragon at bay until Rondel came back with a new sword and they could “kill” the dragon together.

(Aubade stayed out of the fray with Grandma… the poor baby was terrified of the dragon mask and screamed out the alarm even when Rondel was bouncing around with it on later.)

As I’ve personally been thinking about the holiday, I’ve been trying to identify the dragons I end up fighting most often. They might not breathe fire and hoard treasure, but they do wreak havoc and destruction on the things that matter most: home, family, and community. The dragons of anxiety and depression try to isolate me from other people and from God with insidious lies; the dragons of impatience and ill-temper try to destroy the relational bridges between me and the people around me. But if I see these things as dragons, it clarifies them in my mind; it gives me something defined to fight against, and a powerful mythic story to illustrate the fight. Like Michael I can throw down my enemy, not because I am so great and mighty, but because there is no one like my God.