Image has the text "5 Things I've Learned About Parenting & Gender" followed by five humans figures in pink, white, blue, purple, and green

5 Things I’ve Learned About Parenting & Gender

Identity, Neurodiversity, Parenting

 

When I had my first baby, I had good intentions about not boxing him into a prescribed, stereotypical gender role. But I also had a lot to learn, about gender and about parenting too.

Seven years later, I still have plenty to learn about gender issues (and about parenting too!), but here are a few things I can share:

  1. Gender is not binary.

It’s hard to believe now that I ever thought there were only two genders – especially since I have never fit all that well into the pink/blue dichotomy myself – but I did make that assumption, and a lot of other nice people do too.

Now that I know better, the whole idea of a gender binary seems patently absurd. Nothing about human beings is binary. Do we only come in two different skin tones? Two eye colors? Two body types? Two sexual orientations? Two personalities? Sexual anatomy isn’t binary either, but more of a spectrum, with “intersex” being a term for all of the varieties of anatomy that lie between the binary options most people are familiar with.

So why would gender be the only thing about us that’s so black and white?

It isn’t.

  1. Being transgender is not rare.

When I first had kids I assumed that being transgender was so rare, my kids so statistically unlikely to be trans, I didn’t really have to bother incorporating trans issues into my parenting. I was wrong on two counts. Not only is transgender relatively commonplace, but also, even if my kids are not trans that doesn’t give me a pass to not teach them about transgender identity and trans rights.

The most recent study I’ve seen estimates the US population of transgender people to be around 0.6% of the population; however, I believe it’s most likely much higher, because the study counts people who self-identify as trans. Not only is it not at all safe to be transgender in the US today – on average, over two dozen trans people are reported murdered every year – but many people don’t know that transgender identity includes non binary people, and many don’t know that non binary gender identities exist at all.

Even if my kids don’t fall into the category of transgender people, ignorance always promotes prejudice and bigotry, so I now know it’s my obligation to be inclusive whenever we talk about gender.

  1. Children begin to develop a gender identity around age three.

It’s typical for children to begin to develop a sense of their own gender as early as age two or three, and that identity tends to firm up around age five, though it may become more fluid again later.

However, many adults persist in perceiving this to be a normal gender development only for cisgender* children, and will characterize young transgender children as confused or disordered when they assert their gender at this young age. It’s not fair, humane, or even logical to hold some genders to one developmental yardstick and some to another. If a child in preschool tells us he’s a trans boy, how does it make sense to question if he’s really sure – do we ever ask this question of a cis boy?

The sad irony, of course, is that these waters are muddied by the aggressive efforts of adults to police the genders of young children – even of infants! From the color coding of onesies and toys, to crowing over baby girl’s first pigtails or boy’s first handsome short haircut, to the incessant messaging in children’s media, the pressure to be cisgender that adults put on children from the moment they are born is completely suffocating.

Which leads me to…

  1. It’s Not Enough for Parents to be Passively Nonconformist.

It would be nice if raising our kids with gender freedom was as easy as just NOT gender-coding their toys and shoving them into stereotypical cis roles, but alas, the world around us is hell bent on playing Gender Police. And that means that we have to be vigilant about countering their influences and giving our kids the critical thinking skills to make their own judgment calls on what the world says about gender.

Sometimes the messages are overt – we once had a young friend over who told one of my sons that his stuffed owl was “a girl’s thing” because it was pink. Most of the time they’re more subtle, and pervasive, almost atmospheric – I’ve noticed how many of the kids’ iPad games ask for them to input their gender, and the only options are boy or girl, or pink avatar with long hair versus blue avatar with short hair.

So as a parent, my role goes beyond opting out of gender policing – I have to also equip them with the tools to stand up to gender policing when it happens to them, and to question and counter the cisnormative** messaging they find all around them.

  1. Kids are far more flexible and open-minded than us, if allowed to be.

It’s true that children are not born with prejudice and bigotry in their hearts, but they are born ready to adopt and perform social norms (to varying degrees – neurodivergent children are often slightly less oriented toward conformity, which I count among my blessings in life!). Kids who learn transphobic and sexist culture at home are quick to carry it out in their interactions with peers.

I’ve heard so many adults claim that their young cisgender children are naturally masculine or feminine without any coercion from parents, without acknowledging the subtle ways kids’ gender is policed from birth – and even before birth, with many well meaning parents eagerly pinning a gender on their fetus as early as a 20 week ultrasound! If not subjected to this pressure, however subtle and seemingly benign, most young children could and probably would be more fluid and flexible in their explorations of gender.

One day I was looking at a My Little Pony cartoon with my younger child, and I commented on a pony described as “he” that I’d thought the character was a girl. My kid told me, “well, he’s kind of a boy and a girl at the same time.” Without having it explained to him, my 4 year old easily grasped the concept of a non-binary gender identity.

In that moment I could have chosen to nudge him back toward cisnormative culture, or simply affirmed his intuition; of course, I did the latter. “Oh, that’s cool – you know, some people in real life are a boy and a girl at the same time too.” Life is full of such teaching moments, and how we respond to them influences how our children view not only themselves, but other people who are unlike them in various ways.

It’s challenging at times to walk the fine line of countering cissexist*** messages without insulting the things and people our kids like. It can be painful sometimes to see them exposed to ridicule from peers who are raised differently. But the rewards of raising kids with gender inclusivity are plentiful. I’m so grateful that my children are able to enjoy a wide variety of entertainment and cultural interests without being hemmed in by gendered expectations and stereotypes – I see how this gives them confidence, a sense of self, and pure joy unpolluted by prejudice. And my hopes are high that they will be more compassionate people in the long run, with a good foundation built on principles of equality and respect.

* cisgender or “cis” means a person is the same gender as the one designated or assigned to them at birth based on genitalia – i.e., if a baby is born with a vagina, they are typically designated by doctors and/or parents as a girl but may not be so.

** cisnormative means it’s implicitly assumed that people are cisgender, and/or that cisgender is the default position and transgender is an exception or in any way an “other” type of person – e.g., the common anatomy lesson we give to kids that “girls have vaginas and boys have penises” is cisnormative and not factually correct.

*** cissexist means biased against trans people, including non binary and gender non-conforming people.

Image has the text "5 Things I've Learned About Parenting & Gender" followed by five humans figures in pink, white, blue, purple, and green

Image has the text “5 Things I’ve Learned About Parenting & Gender” followed by five humans figures in pink, white, blue, purple, and green

When Do We Get to Be Autistic?

Autism, Friendship, Identity, Neurodiversity

img_3994

*

I’m seeing a new therapist and I’ve told her how much I like to write; last week I told her that I haven’t blogged in a while because I haven’t had the time, but this morning I told her that I’ve realized I am not writing because I don’t know what to say.

She told me that it’s important to keep doing this so that I have a voice.

So I’m going to try to say some things.

*

I have a friend who is autistic and also a kind of mentor to me, someone who’s been around for longer and I look up to her because I admire her sense of fairness and the way she applies a gentle touch to fighting for social justice. And also because she has this way of leaving me with these jewels of words that I keep forever – and she probably doesn’t realize she does this, but perhaps she will recognize herself when she reads this – like when I fretted that my inability to express convincing enthusiasm would put her off and she told me, “you don’t have to do the face with me.”

And when we were talking about another autistic person who was under fire for the way they talked to other activists and she said that she was sad because she knew this person was kind and thoughtful and was being misunderstood because of their communication style, which made her wonder, “when do they get to be autistic?”

*

This is a post that is not about me, or it’s partly about me, but it’s also about all of us. We’re pattern seekers, you see – we Autistics. Or maybe “pattern receivers” is a better phrase, as so often the patterns just seem to be there, revealing themselves to us. The pattern that lately reveals itself to me everywhere I turn is that it’s still not acceptable, sometimes not safe, to be Autistic in this world, no matter how much lip service is paid to awareness or acceptance.

This is about me, and it’s about all of my friends.

It’s about my friend Michelle who writes, “when I am authentic in my neurodivergent way, I see a pattern of becoming distant from friends and isolated from community.”

It’s abut my friend Ally who writes, “Pretty much every person I talk to or meet, is probably ableist and would think that people like me should be prevented from being born or should not be spoken about with accurate descriptive language because it’s uncomfortable and we all know that Big Pharma is taking over the world and just inventing stuff to medicate and don’t you know that autism is just an excuse?”

It’s about my friend A whom I won’t name without permission but who has spent hours with me dissecting what is really going on in our conflicts with non autistic people and how to balance self care with bridge building and… well. Without A I don’t know what I would have done these past few months, really.

It’s about the people at the Autism Women’s Network meetups who express how much they long to show the world what they can do, what they have to offer, what they’re good at, but struggle to attain even the most basic supports, not because those supports are impossible for others to provide, but because the people in neurotypical environments think that we should be able to just suck it up and deal with: painful lighting, overwhelming noise, fast transitions, sudden schedule changes, our inability to communicate verbally under stress.

*

The awkward thing about being an autistic adult who communicates in words is that we are expected to have “overcome our autism” when we have no such goal even if it were possible (spoiler alert: it’s not). I have personally been congratulated for overcoming autism: a well meaning gesture that means nothing at all. For a time I thought this was a kind of applause for having the ability to pass, but I have learned that it’s code for “we expect you to act normal now and anything that you can’t do we will consider a personal failing.” For adults who were not diagnosed until adulthood or are not diagnosed but have self identified, this goes double.

We still ping as different, as other, as unacceptable; but everything that pings as non-typical about us is attributed to a cause that is NOT autism – it’s just a character flaw or something we are doing wrong.

– if you have social anxiety, actually you are just
—> rude, unfriendly, antisocial, self-isolating, a misanthrope, a snob

– if you have a direct communication style, actually you are just
—> rude, confrontational, aggressive, insensitive, argumentative

– if you are drawn to deep connections in conversation, actually you are just
—> too serious, too intense, a downer, socially awkward

– if you have sensory aversions, actually you are just
—> fussy, entitled, irritable, negative

– if you have executive functioning challenges, actually you are just
—> lazy, disorganized, incompetent, a complainer… or not that smart.

So the people who “just don’t see it” when you say you’re autistic or who think it’s so great that you’ve “overcome” the way your entire mind and body are designed simply because you can say words with your mouth or type words with your fingers (sometimes), definitely see that you are not like them. They’ll tell you so all the time, in their own way.

*

I worry that because I fumble to express myself in a room with people but manage to find my words when I’m alone with my fingers on the keys, I will be seen as

—> disingenuous, passive aggressive, two faced, or just plain

Crazy, like those old coworkers once called me when they found my blog…

I’ve had a pervasive feeling of not being safe lately that’s been impossible to shake. I don’t mean that I have felt myself to be in physical or mortal danger, but my soul, my true self, is afraid to come out. I’m aware of being too much, too intense, too serious, too too… . I worry that owning the word disabled will cause people to see me as incompetent. I feel that asking for more help or support will cause others to think that I can’t do it at all. I can’t stop pushing myself to prove my worth through my hard work. I will wear myself out trying to earn a place in the world.

I look on others who come out to the world with powerful vulnerability, who find their strength in softness, with keen envy. I feel miles away from that. Light years away.

I don’t feel brave enough to speak. But someone told me that I should keep writing because I need to have a voice. If this is my voice, I have some things I’d like to whisper.

5 Supports That Changed My Life

Autism, Identity, Neurodiversity

It’s been over a year and a half now since I first began to realize I was autistic, and what originally kicked off that process of self-discovery was that the demands of ordinary life were beginning to outstrip my personal resources, and I needed to know why. I’ve since heard this described by autistic people in different ways, from “rolling burnout,” to “my workarounds were no longer working,” to Cynthia Kim’s phrase “playing life in hard mode.” I myself often described myself as being in survival mode on a daily basis, and my therapist once said that I needed to get “out of the basement level of functioning.”

When I sought a diagnosis in spring of 2015, there was some magical thinking involved in my expectations for psychological diagnosis and therapy. My goal was to go from being a flailing, falling-apart passing-as-neurotypical person to a thriving autistic person, which I still think is an excellent goal. However, it doesn’t happen by magic and as it turns out my psychotherapist was not the Blue Fairy.

bluefairy

Image is from Disney’s Pinocchio: The Blue Fairy points a magic wand at the nose of Pinocchio the puppet, who is sitting on a shelf amongst pots of paint.

It’s been a gradual, trial-and-error filled journey, but I’m finally getting to a place where I know what kind of supports I need in order to thrive, and can access them. By no means should anyone assume that what works for me will work for them, which I’m sure my readers already understand. But here are some of the supports that have been integral to my ability to cope with ordinary life without feeling like I am overdrawing my energy bank every single day. These things have gotten me out of survival mode and made me feel more like myself again.

BoseQC15

Image is a pair of black and silver Bose QuietComfort noise canceling headphones.

Noise canceling headphones. The particular pair that I own are Bose QuietComfort 15 (I asked around and was told by a few people that the older 15s are a bit better than the new 25s). This was one of the first things I did for myself after getting diagnosed with autism: I stalked eBay until I found the make and model I wanted for a good price. They are expensive, but if you are noise sensitive and can afford to splurge or save up for them, they are well worth the cost ($250-300 on Amazon, I got mine for under $200 on eBay). Bose QC are high quality, comfortable, and are wireless when you use the noise canceling feature only (that runs on a AAA battery). If you want to listen to music with these you have to use a headphones cord. Bose does also make a Bluetooth enabled pair so you can listen to music wirelessly – those are called SoundLink ($250-280 on Amazon).

Lately I have not needed noise protection quite as much, but for a while I wore my headphones every day, and on low-spoon days (when I didn’t get enough sleep and/or was recovering from a social event) sometimes I wore them all day long. You can still hear people talking at average volume in a room with you, so I could hear my kids and husband and do everything I needed to do – but they dampen really loud and/or high pitched sounds, and also ambient sounds like the refrigerator running, iPads playing cartoons, and so on. I didn’t even realize how much that kind of background noise was zapping my energy until it was gone. The downside of these, besides the cost, is that while they are super comfy by themselves, I have trouble wearing them at the same time as my reading glasses. So people who wear glasses all the time may have some issues with fit. Also, they are (obviously) conspicuous, and I can tell you from experience that if you wear them out in public people WILL stare.

Herebuds

Image shows a pair of white Here Active Listening earbuds in their case, a white iPhone with the Here logo on the screen, and a pair of sunglasses. The sunglasses make me laugh but I choose this photo because it shows the buds, case and app.

Noise canceling ear buds. Yes, I have noise canceling headphones AND earbuds. After I purchased my headphones I started hearing a lot of buzz (no puns intended) in the autistic community about Here Active Listening earbuds. These actually do a lot more than noise canceling – basically they are a smartphone-controlled EQ system for your ears – but I mainly use them to block sound. They started off as a Kickstarter project and now are issuing a trial run of the buds, which means you must sign up on a waiting list, and when a pair are ready for you, you receive a code in order to purchase one pair. For me this took exactly 6 weeks (plus a 2-3 days’ shipping), which seems typical from what I’ve heard. Currently a set of Here buds costs $200 but once out of the trial phase they will likely go up to $250.

I was nervous about buying Here buds because, like many people, I worried about whether they would be uncomfortable. I have small ears and many earbuds do not fit me at all. Here buds come with two or three different sizes of squishy flexible bud attachments, and yes, they fit me well. There are some times when I don’t like the feeling of them in my ears, but most of the time, they’re fine. I would say if you HATE earbuds do not get these, but if you can tolerate a soft earbud, they are pretty comfortable.

The EQ itself is very good, has powerful noise canceling ability and can be adjusted in many ways, by turning up and down the decibels, bass, treble, etc. It comes with a number of preset “filters” and also a custom live EQ setting. One common complaint is that it does not have a directional microphone; that means you can tune out everyone’s voices or tune in all voices, but you can’t tune in the person sitting across a table from you while blocking out the people behind you – though I’ve read they may try to add that feature in a future model.

My main complaint is that my Here buds are a little buggy. Sometimes I hear a buzz in the left one. And I often have trouble with trying to disconnect them from Bluetooth and reconnect within a single day – so it’s usually easier to just leave them on, and switch back and forth between a noise blocking filter like “Office” and a tune-in filter like “Human Speech” if I need to, for example, hear the kids playing in another room, and then tune out again. These issues can be resolved by resetting the buds, but that’s kind of a pain in the ass if I’m in a state of overload and needing relief. Even so, I use these quite a lot. They are less cumbersome than my headphones, I enjoy not having something on my head when I use them, and they’re so small and discreet that it’s very convenient to throw them in my bag when I leave the house in case I need them while I’m out. For anyone with noise sensitivity who doesn’t mind earbuds, I recommend them highly (more than the headphones, if you have to choose).

drugs

Stock photo of an orange bottle of prescription drugs lying on top of a notepad that says Rx. Note: these are NOT my actual pills.

Prescription drugs. This is NOT a support I am comfortable recommending to just anyone, since everyone is different and some people do not do well with medications and some choose not to take them, which is their right. However, I wanted to include meds because for one thing, it’s the truth – they have helped me immensely – and for another, this is me doing my little part to push back against ableist attitudes toward psychiatric medications. I view meds as just another support, one that people should be able to freely choose for themselves, and hopefully should be able to get help finding one that really works for them.

A thing about being a neurodivergent person, particularly one raised and socialized as a girl, is that you tend to defer to anyone in anything resembling a position of authority, even when you know they are wrong. You’re pretty sure they’re wrong. But they probably know better so maybe they are right? I won’t go into all the boring details but I took an antidepressant that wasn’t helping me, instead of the ADD med I knew I needed, for nine months, because I didn’t fully trust myself to know better than a doctor how I felt and what would be good for me. Eventually I found a better doctor and a better support.

Taking a drug doesn’t mean that I don’t accept my neurology – if anything, I am better able to appreciate the beauty of my ADD-autistic mind now that I am not scraping the bottom of the barrel for the inner resources to function. I don’t feel like someone else, I feel like my real self, the self I was before things got overwhelming. Maybe if I could move out to the seaside and live in a wifi enabled cottage and my kids were a little older and more self-sufficient or I had more help – and if life were simpler, maybe I wouldn’t need meds, but right now my environment is such that I need a little pharmaceutical support and I am not ashamed of that. Nor should you be if you need that too.

(Side note that I dislike the terminology of “attention deficit disorder” (I mean, really!) but am using it to be understood by a broad audience. I would love a better term, maybe attention divergence?)

Screen Shot 2016-06-01 at 2.25.55 PM

Image is a screenshot of my Habitica browser page: at the top left are my avatar and stats, with my party’s avatars lined up to the right. Below that from right to left are lists of: Habits, Dailies, To-Dos, and Rewards.

Habitica. Oh how I love Habitica!

When I got off the antidepressant and on ADD meds, the boost in mood was immediate, but executive functioning improvements still took more time and effort. Fortunately I remembered another autistic person I knew online had mentioned months back (when I was still too overwhelmed to even consider it) that they used Habitica to get their stuff done. I suspected that a task manager set up like a video game would be perfect for me, and I was right.

The above photo is a screenshot of my actual Habitica dashboard on my computer (I also have it on my phone but I use the desktop version more). At the top left is my avatar: yep I’m a Level 14 Rogue riding a golden lion and accompanied by a white bear cup, and proud of it. To the right of that are the members of my party, a social function you can use, or not. Below all that I let you see some of my tasks and how they’re organized on Habitica (as you can see I’m in a bit of a nest feathering phase with my to-do list).

I looooove this game. I don’t avoid or forget to check my to-do lists anymore because… it’s fun! This is another thing that I’m sure won’t work for everyone, but for me, getting a couple of pieces of virtual gold for doing the dishes feels motivating. It helps me manage my time, not stress about deadlines, and it also helps me to relax and enjoy my downtime because I don’t have to worry that I’m forgetting an important task.

downtime

Image is a photo my 4 year old took of me. In the foreground are chairs around a table with toys and a bowl on top; in the background I am seen from behind looking out through glass doors – a person with short brown hair and a gray sweater. To my right is a wooden hutch.

Downtime. This is not an app or a medication, but actual downtime. And plenty of it. Half a lifetime of “playing life in hard mode” has conditioned me to feel like I always have to be hustling just to keep up with the minimum standards of getting by. I’m aware that it doesn’t always appear as such from the outside, but I have always felt like I am working twice as hard just to do the things that everyone else seems to do with ease. A former friend once described me as “ambitious,” and at the time I was genuinely shocked by that characterization, but now I think I understand that being driven to succeed, somewhat perfectionistic, hard on myself, and religious about productivity, are adaptations I have cultivated (mostly unconsciously) in response to having an invisible disability.

But the cost of those adaptations is that I repeatedly push myself too far and crash. That worked well enough – I could hide it, mostly – when it was just me, but now I have a family, and it’s too hard on all of us for me to be crashing all the time.

So I am learning to build in lots of downtime as an essential support. It helps that my kids need this too (one of them especially does) so it’s not really an option to skip it. The actual *time* has been available ever seen we chose to homeschool, but the pressure I put on myself to “be productive” every day was still there. Additionally, getting to the point of rolling burnout meant that I never actually experienced relaxation – only crashes. There is no downtime in survival mode, only survival. So, all of the above supports enabled me to access downtime, and untangling myself from the internalized ableism that drove me to always-be-productive is necessary in order to truly relax.

(Easier said than done, I know.)

Hiding

Autism, Friendship, Identity

When I was 11, I had a crush on a boy who was a year younger, a boy from my church, and we also went to school together. Liking a boy in a lower grade than oneself was a thing that was simply not done, and so I concealed our puppy love, until it came out, as such things always do. My friends at the time both teased me for going out with a fifth grader, and embarked on a mission to flirt and lure him away from me. They had me coming and going, mortified, jealous, and exposed.

But that’s only kid stuff. Not like the time in college when I broke out of my usual mode of strict privacy in an attempt to bond with some girlfriends, trying to copy the way they forged their social bonds, by participating in a frank sexual conversation. And then one of them later repeated something highly personal that I’d said. Loudly. To a large group of acquaintances. In front of me.

I don’t mean to be oversensitive, of course. Maybe I was being overly sensitive too when I started my first blog, pouring out my innermost thoughts, kind of like I do here, but anonymously. It was something only my fellow anonymous internet bloggers ever saw until I worked up the courage to send the link to a close friend, the closest friend I’d had in years (maybe ever), to see what she thought, and she flatly replied, “it’s not you at your best.”

I should say former friend, because later that person sent me a letter informing me that she no longer wanted to be my friend, because she wanted to move on from me. That was not the first time that happened to me, by the way. It also happened to me the summer before seventh grade, a similar letter in the mail telling me that my friends had decided to be my friends no longer.

But, hey, I misjudge people sometimes. Like that time in my early 20s when I quit my job, and attempted to retain a friendship with one of my coworkers, sending her an email after I’d left, and including (again, oops! I never learn) a link to my blog. In hindsight, of course, I can plainly see how profoundly NOT my friend that person was, but at the time it didn’t cross my mind that she might cross me. She never replied, but another former coworker did email me, to tell me my “friend” had forwarded my blog to every single person in the company and they’d all laughed at me together and joked that I was crazy and in need of psychiatric help.

That’s the first time I’ve ever told that story to anyone but my husband, by the way, because for several years I couldn’t even think of that episode without feeling humiliation and shame nearly as fresh as the day it happened. I had nightmares about having to return to the company to work there again, for years.

Still, you would think that by age 30 I would have developed a better radar for trustworthy people. Instead, at that stage of life I found myself being dumped by a close colleague I’d worked with intimately for a few years. We were partners in business and, I thought, friends outside of work, until the day – which seemed to me completely out of nowhere – she told me coldly that I was nothing without her and she didn’t need me anymore. Nothing. It might sound like a House of Cards parody now, but it didn’t feel funny as I stood in a parking lot and wept uncontrollably, feeling like the unprofessional child she’d told me I was, but unable to stop myself crying.

Hide everything you care about, hide the things that matter, hide all of your feelings, hide your true self, because letting people see you is dangerous.

Humiliation and shame. Those are recurring themes in my social life over the years. The life lesson learned is to hide. Hide everything you care about, hide the things that matter, hide all of your feelings, hide your true self, because letting people see you is dangerous.

Hiding is an early instinct for autistic people, I think. Because it only takes a few rejections and betrayals for us to note the pattern: expose yourself and you may be hurt. Because we have an intense drive to protect ourselves from pain. Because we often can’t tell which people, places, and situations are safe, so it’s best to just avoid risking it, and to hide our most valued things, our most intimate selves, out of sight.

The trouble is, this is unsustainable. Because like any other human being we long for connection, and so eventually we’ll do it again and take a risk. Like Charlie Brown agreeing to kick the football (a thing I think Charles Schulz well understood – I suspect he was autistic too), we always will end up trying again, one more time yet again, to let ourselves be seen and hope that this time people won’t pull the football away, and let us fall flat on our backs, and laugh.

Sometimes it becomes a weird feedback loop where, because we are hiding, we find ourselves surrounded by people who only actually love the false fronts we put on. Like my former friend who told me my innermost feelings were not “me at my best,” to these people our “best” side is the side we show to please them. This is not a deception, however; we have fully internalized the belief that we must try to be this “best side” of ourselves, the one that earns the approval of our family, friends, teachers, colleagues. We want to be at our best, don’t we? And so we push those embarrassing other parts of us down, out of sight, and we hide.

I still hide, all the time. I hide the things I love, the things I’m passionate about, the things that delight me, the things that I enjoy just for fun’s sake. I hide the books I’m reading when they’re about social justice. I hide the video games I play on my phone because they are probably silly. I hide the guilty pleasure TV shows I watch late at night on Netflix.

I hide my blog in plain sight. That might sound baffling, because it’s a public blog that I write under my real name and I actively promote it on social media, but I also pretend to myself that my loved ones don’t read it. I just try not to think about them ever seeing my words. I never send them links to posts I write, I don’t talk about blogging, I cringe to mention the word “blog” in front of my own husband. It’s not that I don’t want them to know the real me, it’s that I’m embarrassed. I’m afraid. I can’t even let myself think about how exposed it makes me feel because if I think about it for too long I feel tempted to just delete the whole thing. Retreat. Hide.

I don’t have a solution for this; I expect that I never will. I’m just trying, now, to at least stop feeling ashamed for the times that I let myself come out of my hiding places.

When I was a kid I used to read Peanuts in the Sunday paper, and when I was very young I believed there was a chance that someday Charlie Brown was actually going to kick the football. Why not this time? It could happen, right? And then when I got a little older I just felt angry at Charlie Brown – why did he keep letting Lucy trick him, he knew she would pull it away, why did he even try?

But now as an adult I know that Charlie Brown would always try to kick the football one more time because that trying again was part of who he was, and that was one thing no one could never take away from him.

Unfurling

Autism, Identity, Neurodiversity

For the past two New Year posts on my blog I’ve gone with a botanical theme: “Green Shoots” in 2014 and “New Leaves” in 2015. Perhaps I should call this post “Flowering,” but then that would leave me with “Gone to Seed” in 2017, wouldn’t it?

Also in recent years I have chosen a word to be my mantra or theme for the year – I was doing this before I knew “One Word” was a thing, which I don’t think makes me extra cool, more like extra out of touch with pop culture. In 2012 my word was PEACE, in 2013 GROWTH, in 2014 TRANSFORMATION, and in 2016 it was KNOWLEDGE. I choose these words in kind of a woo manner, by plucking a word intuitively from my subconscious as it comes to me. They always end up feeling on point, probably in much the way that horoscopes are on point, by being sufficiently vague and universal enough to never not feel true.

This new year I didn’t have a word come to me as such, but more of a feeling. I’m going to call it STRENGTH because I must describe it somehow. I suppose what I am predicting, or at least hoping, is that this year all the upheaval and remaking of my world will solidify and stabilize somewhat into something more cohesive and robust.

I don’t know if you’ve ever seen one of those Internet videos that shows how a caterpillar turns into a butterfly – what happens inside the chrysalis. I probably hadn’t thought too much about it before but if I had thought about what happens to the caterpillar, I guessed it would be sort of like how a tadpole turns into a frog: this part grows, that part shrinks, shapes change, and voilà.

Like most people who saw the video, I was shocked to find out that that the caterpillar breaks down into a kind of goo before it re-forms into a beautiful winged insect. It’s not completely formless, as it still possesses a basic nervous system, but indeed the poor creature breaks down almost completely into a primordial ooze. From that the butterfly assembles itself.

This feels an especially fitting metaphor for me as a person who’s undergone radical transformation and growth, and acquired life altering knowledge in the last few years. I don’t know if the caterpillar feels fear, pain, confusion, or hope as its old form is undone, but – well.

When I was a young child I once saw a monarch butterfly hatch from its chrysalis, inside of a jar that my best friend had kept it in with a sprig of milkweed. My friend gently laid the jar on its side in the grass so the butterfly could walk free on its own. What surprised me then about the animal was how delicate and uncertain it seemed. It was not the triumphant moment I’d imagined in which the butterfly burst free from its shell and flew away. Instead, it emerged slowly, tentatively. Its wings were damp and took some time to unfurl. Its legs seemed a bit frail for the first minutes as it stepped into the open lawn. It took time to rest and gather strength before it could fly.

This is what I envision for myself in the coming year: to unfurl these fragile wings and grow stronger in my sense of self, to begin feel my power in my life, in my work and in my family. I hope that my whole family will feel a new strength and stability this year, to gain confidence in our endeavors and in our connections with each other.

butterfly

Image is a yellow and black butterfly sitting on a green leaf, with the text: This is what I envision for myself in the coming year: to unfurl these fragile wings and grow stronger in my sense of self. – eisforerin.com

I Dreamed of a House

Autism, Identity, Neurodiversity, Writing

Dust particles catch the light, forming a glittering beam that looks solid, spearing the front door through its little square windows and ending in blocks of sun on the rug where we put our shoes. I turn to look outside and press my nose to the top middle pane of the window, touch my lips to the dark wooden sash. The wood always smells like rain and the rain always smells like this window. But it’s not raining now. It’s that time when the sun gets really yellow and loud, and you can’t watch TV because there’s too much glare even if you try to close the long green curtains.

I slide down into the couch and try to arrange myself so I’m sitting upside down, my legs up on the back of it, and my head hanging off the seat. When I’m sitting upside down I look at the ceiling and pretend it’s the floor. The living room ceiling has dark wooden beams across it, and I imagine hopping over them as I run across the room. After a while it starts to feel real, that I really live on the ceiling, and can walk from room to room on all the ceilings and see the whole house from there, looking down, or is it up, at all the furniture, and I start to wonder if I could ever invent suction boots that would let me walk up the walls and right over the ceilings for real. And then I am sad.

I once had a recurring dream about a house. It began in my teens and lasted through the next 20 years; every few months I’d have more or less this same dream: I am in a house, it’s my house but not like my house. I discover that there is space in this house that was always there but I never knew of it before. A secret wing, an attic, a basement – the space is vast, larger than seems possible for a room to be and still be part of my house. Finding this place is exciting and important, the key to everything. I wake feeling that a mystery has been revealed in my sleep, but forgotten as the dream fades.

Around the time I realized I was autistic, I stopped having that dream.

One question people ask when you identify as autistic in adulthood is, why find out now? What difference can it make at this point in your life? The answer is that it makes all the difference, for many reasons. For me it is hard to understand why anyone wouldn’t want to know themselves, but I know for some autistic adults this self discovery isn’t as important, and that’s fine for them.

But there’s also the reality that I can’t wear this old costume anymore. It’s coming apart at the seams and bits of the real me are sticking out here and there, anyway. Since my schoolgirl days people have always commented on my rigid posture, the way I pace when everyone is standing, the way I stand when everyone is sitting, the way when I finally sit down I sit at the edges of chairs, my hands tightly clasped or shoved under my thighs or balled into fists. “Hey, relax,” I’ve been told with a chuckle, too many times to count. “Sit down, you’re making me nervous.” I insist tersely, “I’m fine,” not even realizing. Every atom of my body holding tightly together to muscle my way through it all.

The easy part of it is surprisingly hard, and that’s finding out who I am now. What are my sensory processing differences? One would think that this would be obvious, but when you have lived a few decades not knowing that your perceptions of things are different from anyone else’s – assuming your reactions and responses to everything must simply be wrong – you end up having suppressed not only your reactions to stimuli but also your perceptions. Uncovering these is like unearthing a time capsule, from a time that never was – a time when I was truly myself, when I spoke, moved, felt, and thought with freedom.

Uncovering the natural movements of your own body is uncanny and startling. A lot of autistic people flap their hands when excited or agitated. I don’t flap. Until one day I read a disturbing news story, set down my phone and find myself flapping. And it feels familiar to do this. But where did this come from? It’s not as though I’ve gone looking for ways to act more autistic. By clearing away the dirt and detritus of a life lived trying to be someone else, by peeling away the layers of people that I tried to be, things emerge, unexpectedly.

I had a dream in my adolescence that I was a mummy. I walked down to the water near my house, trying to hide from passing cars in the night. I knelt at the water and tried to tear away the waxy bandages covering my body. But when I did, I found that my heart was exposed, red and beating in my chest. I was afraid. 

Image is a red brick wall with the text: First I must reassemble the foundational building blocks of my world. eisforerin

The hard part of this is disorienting and feels impossible at times: piecing it all together, trying to form a coherent life story for myself. Who I am now is just a moment. It seems important to reassemble the narrative, with this new information. The clues I have are few, because of the way the old stories I told myself distorted reality, and because of the way I’ve simply forgotten the rest, whether by will or by an inability to make sense of it – my brain refusing to allow long term storage to the incomprehensible – I cannot say. Sense memories are the memories that float up when I go dredging up the past, as if to reconstruct my very experience of the world. Feelings come to me – fear, anger, sadness, joy. I want anecdotes, but memory tells me – no. First you must reassemble the foundational building blocks of your world. This is what the sun felt like, this is how the water smelled, these are the sounds that filled the atmosphere.

I have my own bedroom at the back of the house, for a while anyway. The oak trees grow tall at this corner of the property and so it is always shady in the daytime and filled with the sounds of leaves rustling. In summer with the windows thrown open at night, fat junebugs hurl themselves at the screens while I try to fall asleep with a lamp left on, reading in bed. I have a pine wood desk with a tidy desk blotter that makes me feel like it is a real person’s desk where real work is done. I have stationery I use to write to my pen pals, eight pals at once at the peak of my correspondence – my online friends before there was an online. Later in that room I am a teenager and my parents have bought me a brand new oak wardrobe, a beautiful piece of furniture that makes me feel like a real person with a real place to keep my clothing. But one morning before school I have so much trouble trying to choose what to wear that day that I cry in a rage and slam all the doors open and closed and open until one of them cracks, badly, along one rail. I stop. I never tell anyone that I did this. I am ashamed.

Finding other people out there like you when you thought you were the only person like you is also strange, both unsettling and beautiful. When I was a child, I loved the story of the ugly duckling. The ugly duckling, of course, is not ugly at all, but is a cygnet born into the wrong world. Abused by the other animals in the barnyard for looking and behaving “wrong,” he flees the farm and seeks solace in other places, but is repeatedly repelled or put in danger from which he must again run away. He spends a season alone, and in his despair, he finally throws himself before a group of swans, expecting and even willing himself to be killed – but at the same moment, he glimpses for the first time his reflection in the water, and the swans accept him as one of them.

Since I realized I was autistic, I started to have a new recurring dream about a house.

I’m in a house, it’s not mine but it’s one that I have stayed in or am staying in and I’ve fallen in love with it. It’s unconventionally designed, rambling, even vast, with lots of surprising turns and hidden hallways. Each room is unique, quirky, with its own vibrant personality. Other people live here – some of them known to me, some not. They each have claimed their own space, but there are still rooms available. There are multiple kitchens and a huge backyard. Sometimes I am showing this house that I love to other people, showing off its charms. Sometimes I am exploring it alone. I think about moving in, but I hesitate. I love it, but can I live here?

And then I am walking through the house with my husband. We are planning out where the children could stay, how we could make this place safe for them. There is a realtor there, waiting for our decision. We tell him: we’ll take it.

And that’s the last time that I dreamed of a house.

In Fall We Begin Again

Autism, Identity, Neurodiversity

As the last overly warm days of early fall drift away, things begin to settle. To settle, they first shift, turn, transform, change. I tuck my crisp shorts away in a plastic tub and pull out stacks of thicker, softer things, fuzzy cardigans, lush woolen scarves. My hair seems to change density, into something wispy that floats in the dry air. After an almost-unbearably-hot shower I smear lotions on my legs and arms. At night in bed I fidget, kicking my legs out to try to un-wrap my pajama hems from around my ankles, scratching at one last annoying tiny itch on my nose before I can fall asleep.

Image is a faded photograph of fallen leaves in the grass, with the text, “What has changed in a year, but everything? – eisforerin.com”

This time last year I was finding something out about myself. To go three and a half decades without ever seeing your reflection anywhere and then suddenly to see it is an uncanny feeling – startling, exciting, scary. And not only to see yourself, but to be seen. “I’m not autistic, but…” I said. “Don’t be so sure,” she told me.

Through the holiday season, I had a secret. As I sat at the table eating Thanksgiving dinner with family. As I opened presents with my husband and children on Christmas Day. It felt thrilling but dangerous – a little like being in love. A strange comparison, but it was that urge to tell, a strong desire to share it with the people in my life, while feeling that it was unsafe to do so. That I had something to lose.

Fall isn’t showy like spring, but its changes are no less dramatic. Spring may be the time when everything blooms, when things are born, but fall is a chance to start over. Trees shed last spring’s leaves and rest, flower bulbs nestle beneath the earth, small animals burrow down into hibernation. The air crackles with static electricity and the promise of snow. We slowly shed the self we were this year as we think of who we will be next.

What has changed in one year, but everything? What I have lost is confusion and a feeling of floating. What I have gained is a place in the world.

This year I’ve shed my secret and I am settling. Things are shifting, turning, transforming, changing. Always changing.

*

I wrote this post for Autistics Speaking Day. Please see more at the Autistics Speaking Day Blog.

Stranger in a Familiar Land

Identity

Finally back from a near two week vacation, I am slowly picking up all of the pieces of unfinished business I left at home, the daily routines, and the toys forever scattered across the floor, to get back to normal life.

I drove from Nebraska to Massachusetts with my two kids, and back again. Just us, because Mike does not get any vacation time from work until next year. Before we departed I was already in a bit of a crashed state. I was worried about how I would be able to navigate things like pit stops, hotel accommodations, and driving eight hours a day for three days each way, with two young children.

To help manage this, I balanced organization with wiggle room. I packed everything we might need. Favorite toys and books, weighted blanket, plenty of clothes, Advil, nail clippers, everything, everything. I downloaded some videos to the iPad in case we found ourselves offline and in need of electronic entertainment (we did, and that was extremely useful!).

I mapped out our route including picking out towns we could stop in overnight (giving myself two options in case I wasn’t able to make it to the further destination that day). I price compared hotel chains so that I knew which hotels to look for, but I did not make reservations in case our schedule did not go as planned – I didn’t want to be stressed out about making it to a precise hotel each night. I packed snacks, brought water bottles, and my brother-in-law lent us a DVD player for the car so I brought ALL the movies.

I packed one giant suitcase for our main stay with family, and one small rolly case that contained everything we needed for two nights in hotel, so that I could carry it all up to the room myself (assuming the kids would not help carry anything, because you just don’t want to depend on little kids being 100% helpful!).

And of course, I mentally prepared the kids for what we were doing. That we would drive for three days to get to their Nana’s house. That daddy couldn’t come but we could call him on the iPad and do a video call. That we were going to be driving a special surprise car (I rented a car so I could not describe them WHAT kind of car it was until I picked it up that morning). That we would sleep in hotels two nights and then we would be staying at Nana’s house, and also Pop’s.

The traveling went quite smoothly. Once I was in motion, I was not as nervous as I’d been when I was anticipating the trip. I was reminded of a blog post by M Kelter, in which he wrote, 

It took me a few years to understand why [when] I traveled, felt completely out of place…yet oddly comfortable at the same time…then finally realized: I’m more at ease in strange settings. Awkward is my natural state…so trips overseas, where I’m an outsider, a tourist, and the expectation is that I won’t mesh with the surroundings…that’s a good fit for me.

For me, that’s what travels means. Suddenly, my daily, inexorable social discomfort is appropriate to the context. It’s a rare thing to feel. I like it.

That is true for me too.

The children traveled well. We drove about eight hours each day. The last hour was always a bit frayed, but we made it through. We ate fast food, which we never do in regular life, but was easy and kid friendly and fast while traveling. We got pizza delivered to our hotel one night, spaghetti another. On the way out they finished all the snacks I’d brought by the end of day two. On the way back we were better prepared, food-wise.

The hardest thing about traveling with kids and no other adult is that you all have to go EVERYWHERE together. One person has to pee, everyone goes to the bathroom whether they like it or not. Even if one of you then decides they didn’t have to pee after all.

If, after lugging all the stuff up to the hotel room finally at last after eight hours of driving, you realize you left your phone charger in the car, hey guess what kids, we’re going on a super fun adventure back down to the lobby together!

Overall, though, it was surprisingly not bad at all.

We made lots of good memories with family, including boat trips, ferry rides, swimming at the beach, a pool party, feeding chickens, and even a trip to the Agricultural Fair in my hometown. It was lovely to see my kids strengthening bonds with geographically distant family members.

I often felt lonely in a crowd while traveling, but that feeling had a comforting familiarity. I missed Mike and texted with him a lot, but the upside was that there were times that other family members were entertaining my kids so I got some restorative time alone. And not insignificantly, it was a confidence booster for me to realize that I could accomplish something as epic as a solo-parenting 3000 mile journey by car.

Re-entry into regular life has been a little rocky, as the end of vacation tends to be. Though we are back to our old routines and to our missing family members (Mike, but let’s also not forget our canine buddy) and to our beds and our home, we’re also back to the grind. No longer is driving or swimming the only thing on the itinerary – even without school, we have appointments and obligations galore. I have messes to clean and meals to prepare.

While I was traveling I had a rekindling of imagination, comics and blog posts springing to mind fully formed, but they’ve partially evaporated in the faster pace of home. Time to myself no longer arises organically but must be carved out, sometimes with painstaking force. There is, to be frank, a certain letdown in realizing that a vacation was not a permanent cure for what was making me feel pulled so taut before we embarked. And so I push on through.

Spoons, Splines, Executive Function

Autism, Identity, Neurodiversity

I’ve been wanting to write a blog post about executive function for several weeks. The funny thing is, compiling the information and the writing such a post requires significant executive functioning effort, and I haven’t been able to muster it. Fitting!

Executive function (EF) is hard to explain in a simple way because it does so many things. Some call it the command center of the brain – it is responsible for things like decision making, planning, problem solving, attention, working memory, verbal reasoning, transitioning, time management, and more.

Take for example one ordinary task that many people do almost every day: making dinner. There are so many executive functioning tasks just in making a simple dinner it’s difficult to list them all, but they would include: deciding what to prepare, determining which ingredients are needed, locating them all, calculating how much time each component (also the entire meal) will take to make, measuring or chopping ingredients, doing everything in the proper order, paying attention so that nothing is underdone or overcooked, dealing with distractions, serving appropriate portion sizes, locating appropriate plates/bowls/flatware….

Do you still have the energy to eat?

Cooking dinner is a relatable example, which is why I used it – lots of neurotypical people find preparing a meal to be a bit taxing, at least sometimes. But if you are neurotypical, try to imagine if nearly everything about your day was that labor-intensive for your brain. Taking a shower, getting dressed, making plans for the day, keeping yourself (and everyone in your care) fed, tidying up, and so on.

Having some executive function challenges is common to autistic people, but also to other atypical neurologies, such as ADD/ADHD, depression, and some learning disorders.

Image is a basket full of white plastic spoons, and over that are the words, “Everything that I commit to has to be considered in the bigger picture of whether I will likely have the energy to do it that day, week, month.”

There’s a popular metaphor that a lot of disabled people refer to called Spoon Theory. I’m aware that not everyone loves this metaphor, but it’s so well known it’s worth knowing about because you will probably come across it eventually. Spoon Theory was invented by a woman with lupus to explain to her able-bodied friend how she must conserve her energy in thoughtful ways, because she does not have an unlimited amount, and every single thing she does has a cost. The disabled person has a finite number of spoons to “spend” in a day, and depending on their disability, each physical task, executive functioning task, social interaction, sensory experience, and so on – will deplete their number of spoons.

There’s another really good metaphor that an autistic person came up with, and I think people with ADHD will also relate closely to this, called Splines Theory. The phrase “reticulating splines” is a gamer inside joke – a made-up term that some old computer games used for their load screens. Splines Theory aims to explain why autistic people may need a lot of time and energy to “load” a new task, and may then become hyper focused on the task, and have a difficult/impossible time dealing with interruptions or moving onto another task.

I feel that in the past year I reached a state some call “autistic burnout,” which is what precipitated my seeking a diagnosis and more support. I sometimes feel like my executive function has collapsed. It’s like a toddler in a meltdown who goes limp-noodle and suddenly weighs a thousand pounds. It’s like a dog on a leash who refuses to go another step and seems to turn his body into stone. I stubbornly believe I can do more, but my brain says NOPE. NOT DOING THAT.

Other times it rallies and I can do the thing, and I feel like I’m totally doing it, but then my brain collapses. It takes me hours sometimes to recover from ordinary tasks or outings that are not physically or mentally taxing in better days. But right now, they just are.

I am now throwing all of the self care resources in the book at myself in order to get out of survival mode, or what my therapist has described as “the basement level” of functioning. I am taking care of my family and myself in a basic way, and I’m handling some responsibilities on top of that like illustration work and the co-op startup, but I am tired all the time and EVERY thing I do takes tremendous effort. That includes things I really want to do, which is so frustrating.

Even though I don’t have a physical disability, the concept of limited resources feels all too real to me at this time in my life. If I go to a playdate in the morning, I will not be able to go grocery shopping in the afternoon. If I have a meeting scheduled for the evening, I have to structure my day so that I am not doing much before then. Every thing that I commit to has to be considered in the bigger picture of whether I will likely have the energy, the spoons if you will, to do it that day, week, month.

At the same time, becoming aware of my executive functioning challenges gives me new hope. So many times in my life I’ve beat myself up for failures big and small: why couldn’t I hack it at art school? Why didn’t I do more in college? Why couldn’t I do better as a faux finishing contractor? Why aren’t I earning a decent living as an illustrator? Now I have this fuller knowledge of myself that I can use to build upon my strengths and stop trying to force myself to operate in ways that are not good for me.

I am now seeking help in various ways, but I also have to face the stark reality that I cannot rush a recovery from burnout. The whole point of this is that I need to slow down and have been rushing and pushing too much. Working with my neurology instead of fighting it is a key to moving forward but I am still figuring out how exactly to do that.