Whoopsy-daisy; I forgot a title.

As I work on my thesis and also try to manage and mind the other writing obligations I’ve taken on, I’ve become well aware that my intros are always too long.  I have a point, but first, I have to lead into that point, and, well, I have to lead in to the lead in, too.  This is the third step removed from my point–in case you wondered.  

Now, this transition is acting as an extremely overt but also structurally sound and case-in-point connection between the first paragraph and what I’m about to say, which is that I’m not like other people.  I was thinking about it earlier, as I was telling my mom that my professor for my (final) thesis work this term seems to have a similar quirky sense of humor.  I hope that means she’ll get the zillions of funny points in my writing that, well, no one else seems to find funny.  I crack myself up all the time, like, um, the first sentence of my paragraph here.  I don’t think anyone else gets it, but I’ve learned to be okay with it, because I’m laughing, and laughing (as long as it isn’t at someone else’s expense) is pretty uniformly a good thing, no matter how weird the reason.

Listen, if I can deal with cleaning the litter box by pretending I’m digging for treasure, well, I might be weird but I’m also probably having a far better litter-box-cleaning experience than someone who is normal… and miserable.  I’ll take weird but happy, very happy.

I don’t just have interests and passions.  I am so wholly obsessed with cats that life without them isn’t a life at all.  Spending 15 months in nursing home, I lived for going home and seeing Lucy.  Every other moment of the week was in anticipation of that first little chirp she’d say as a greeting, and the thousand chirps that followed in the few hours we were together.  Now, after two months in our own, teeny-tiny studio, I don’t think either of us has forgotten, or will ever forget, the time apart.  She’s sleeping on the arm of my chair as I type.  Every time I touch her, she chirps the most pleasant little kitty noise.  It’s like a chirp button.  Every touch, every time.  I love it. 

I love her toes.  I love the soft spots behind her ears.  I love the pattern on her belly, and the downy fur on her chest.  I love her wide-open eyes.  I love when she sits like a loaf of bread, and I love when she sleeps in a circle, and I love when a little doze on the arm of the chair turns into a sleep just a bit too deep, and she begins to sprawl and then startles herself when she flops off the limited space.  I most especially love when she lays on her back, paws in the air, and looks at me with a cock-eyed expression that is so familiar but the meaning of which I cannot discern.  I love sleep eyes.  Most of all, I love that when I wake up over and over at night, or when I can’t sleep at all, she is snuggled up against me and always within arm’s reach.  She and I are we.  

I had a terrifying dream the other night.  I don’t want to go into detail, but it was cat-related, too.  I woke up almost panicked, and I reached for Lucy.  Chirp… the chirp.  I love the chirp.

I live hard.  Intense is the word I hear a lot.  When I do something–anything–study, write, work, learn, explain, love, dislike, try–I do it with everything I’ve got.  Saying that “I don’t like” some feeds doesn’t begin to cover the fact that I want to gag when they’re in the same room and have never put many very typical foods anywhere near my face.  “I don’t like loud noises” doesn’t describe my rigid arms and clenched fists at my sides when I’m in public places.  What if something beeps, or worse, what if something bumps me?  “I like words” doesn’t cover the all-encompassing need to write or the fact that I spend nearly every waking hour either reading or writing, because I’m not sure I exist if I’m not taking information in or wrestling with it as I put it back out.

I’ve always known I’m not like other people, but I also had an inherent certainty that I was the one who wasn’t okay.  The autism community, well, we’re broken.  I’m not sure why anything thinks that a huge conglomeration of broken people–a church or a family or a group of people focused around a cause–would be anything BUT broken.  The sum of a whole bunch of brokenness sure ain’t perfection… but it IS completion.  We are not perfect, but together, our abilities make great things possible.  We don’t need to be perfect to be complete.  

Sometimes I think, at least these days, as things are forever in flux (and oh, how frustrating that is), that autism is less of a diagnosis and more of a way that I find my tribe.  I don’t need a diagnosis to know that I’m not like other people.  My strengths and loves and passions are too strong, and my weaknesses are just too weak.  Early on, I needed the word “autism” to give me access to reading that taught me about myself.  I had such a lack of knowing who I was that I had to read external accounts to realize that, why, yes, I do have major sensory issues.  I didn’t know until I read about common behavior that clued me in to the fact that I do those things and thus have a root cause of sensory dysregulation.  Autism was a word that opened up the knowledge of who I had been and who I will be.

But now, I know.  Learning that I wasn’t the only one gave me the all’s-well to discover myself and feel okay about my quirks.  I am well aware, now, that I absolutely love kids’ movies and hate to be surprised, that I can’t make decisions when I’m overstimulated (grocery stores are the bane of my existence), that I lecture far better than I communicate, and that cats are my world.  I no longer need to connect to the experiences of others to know what’s in me… or to be okay with it.  There’s no changing it, so, I figure I might as well accept the quirks as I seek God in everything I do.  As simple as as complicated as that.

Now, when I hear “autism,” I immediately think of other people… the kind of people I want to know.  I want to know people who don’t do masks, who don’t speak in sarcasm, who get past the chit-chat and talk about real things that matter.  Parents, grandparents, kids, adults, diagnosed, undiagnosed, verbal, nonverbal… this is my tribe.  These are the people who don’t blink an eye at my monologues, who text me with a request for a current picture of my cat (because the one from last week is now outdated), and who help me do my laundry while snuggling Lucy between loads.   They’re the toilet paper fairy, when they drop off toilet paper on my doorstep when I forgot to get it at the store.   They’re the mentors who boldly live out their faith, who remind me that sleepless nights (a common occurrence) are the perfect times to pray.  They’re the kids who trust me with their real selves… I hope because they know that, whatever and whoever they are, I’ll affirm their awesomeness.  

The constant flux of the world–relationships, understanding, and my very messed up body–is an overwhelming thing.  But I have an army… not behind me, but with me.  In step, alongside, we’re in this beautiful mess together.  

This Writer’s Life

I’m finishing my second-to-last term in my grad program this week; after a one-week break (ten days if I push and finish up faster) and then another ten-week term, I’ll be the grateful recipient of my Master’s of Fine Arts in English and creative writing with a nonfiction concentration.  

I. Am. Burned. Out.  I can’t describe it and I can’t explain why I wake up in the morning and open Blackboard (the platform for my online program) and feel nauseous.  I use Facebook for two reasons, and the main one is a chance to write and connect with people through that writing.  I get nearly buzzed at the chance to put words together on that screen, and yet, click over one tab, and the guttural disgust returns.  I put out 10,000-12,000 words a week in coursework alone, and that doesn’t take into account blog posts, Facebook posts, editing work, magazine articles, work at the nonprofit center, emails… 

I love to write, and it is the most natural form of communication I know.  My most natural form of understanding the world is synesthetic experience, but that isn’t communicative, so, writing it must be.

I put together a 30-page final project today, and tomorrows will be closer to 60 pages.  Then it’s ten weeks.  One term.  

I love it, but excuse me while I go throw up.

It’s a funny thing, and I’m not sure where in the cyclical process to start my explanation of what’s funny.  I wrote the bulk of my thesis in this term, and early in that course, we talked about the transition from “student” to “writer.”  I thought to myself that surely I had made that transition sometime around when I published my first book.  And then I thought that I actually did the whole thing bass-ackwards (what else is new?  Hi, I’m Lydia, and I don’t every do anything the normal way…).  I published books before I ever took a post-secondary writing class.  Leave it to Lydia, and I say that with both a bit of pride and a hefty dose of eye-rolling.  I appreciate the ways in which I’m different in terms of personality and education and talent and vocation and identity, but I wish my body would be a little less different and at least have a disease that made sense to someone.

The other element in the cycle is that the idea of connection and intersection and greater meaning was a huge theme in the last few months.  My thesis started with that very idea, precisely stated.  I only had two classmates (minimal enrollment course), and one of them is writing a memoir piece that aims to subtly show the ways in which every life experience contributes to a greater meaning.  My thesis ended up veering in a different direction, but it started with intersection and, with that note in its conception, it will always have ties… because everything does.

I thought I was a writer and that the thesis process was a formal recognition of that status by the academic community.  Yes, you write, and we can verify that you have sufficiently completed so many credits of graduate-level work and produced and defended a worthy thesis and, now, we proverbially knight you with this piece of paper and allow you to teach undergraduate students about writing.  I get it.  And I don’t.  My mom often says, “It’s the spectrum in you,” when explaining any one of my innumerable quirks.  And, in this case… it’s the spectrum in me that makes it difficult for me to recognize societal practices that don’t always make sense.  But, I acquiesce without any argument in this case, because I so enjoyed the coursework and thesis process.  I did the first year of it from the nursing home, and it gave me purpose and direction and hope that I had a future.  That’s pretty invaluable, and so, whether I objectively improved my writing ability or not, I am ultimately grateful for the journey.

But, now, here is the funny thing.  I’ve written countless (okay, not really, because there is no such thing is truly countless… but, in this case, I use it to mean “I’m too lazy to technically count”) times on this blog about the fact that I can only truly process my experiences and my world when my hands are on a keyboard.  Until I’ve sorted through it in black letters on a white screen, sufficiently enlarged so that my eyes can actually read the font, life feels a lot like chaos and overwhelming sensory and emotional input and relentless, anxious expectation of the other shoe dropping.  

In the last weeks, I’ve found myself thinking, but not in my usual sensory impressions… I think in language.  I think the way I write, in that, just as I sit down to type and my brain begins to make connections from various, unrelated experiences, now, in quiet moments, my brain has begun to see those connections but without a keyboard.  I always thought it would be akin to painting with no brush… but, to take the analogy further, it might be somewhat like finger-painting.  I don’t have fantastic control over the linguistic swatches that run through my brain, and I don’t yet have the ability to compose in my head and then transfer verbatim on a keyboard.  I feel a bit like I’m replaying pieces a conversation in my head, only, they’re totally novel ideas.

What this changes is that writing has essentially invaded every corner of my existence.  When I make the bed or take out the trash, I weave together this experience and that one and find that words, actual words and not just sensory recollections, are popping up in relation to the connection between the two.  The result is that everything I do, I do with an eye toward writing and understanding and connecting, and, well, where is the separation between those things anymore, anyway?  Without consciously thinking about it, I live with the questions of what the thing means, what it has to do with what I already know or have already experienced, how it fits into my worldview, and how taking in facts or nuances about the new thing might affect my overall perspective on other things.  

Because that–THAT is what I do when I write.  Connect.  Intersect. In short, process.  

There is nothing we do or know or see or experience that isn’t woven into everything else.  Personally, that immediately drives me to worship the God who has control over all of it, from the kings of ancient Babylon to my kitty’s sore ear (which, thankfully, is better), from the heart-breaking situations the world over to the number of hairs on my head.  

I wonder if, now, I’m really a writer, or whether–much more likely–my experience of being a writer will change over time.  It is both cause and effect, as my identity changes in response to my life, while my life changes in response to my identity.  The holiest of hands weaves it all together.

Go Big… or Go Home

This post would be the “go big” part of that statement… no-holds-barred, taking the issues head-on.  It’s posted in full on my Facebook page, too.

Over, and over, and over, I hear parents say that I don’t know what “real” autism is like (oh, I guess my 20-some years of outright suffering was just because I felt like it) and that I’m standing in the way of their kids getting what they need. They say that their kids have behavioral issues and can’t communicate, and I say, “I believe he can communicate, and I’m happy to help you in whatever way I can to make that happen.” No one has EVER taken me up on that… but many do go on to continue to throw attacks at me. The very last thing I want is for any child or family to suffer. Not only that, but I’ll do whatever I can to turn things around. People don’t just refuse the help, they continue to be accusatory… and you know, I’m starting to think that people want to suffer, that it’s become a martyrdom. I don’t want to believe that, and yet I don’t know what else to believe.

“Cure” has become such a dividing word. I realize that, when parents say they want a cure, they almost always mean something different than advocates like me hear in the same word. Parents mean that they want to minimize their children’s suffering. They don’t want a different child, but they don’t want the child to be in pain, without a way to communicate, and self-harming.

I don’t know any advocate who DOES want children to be in those situations. The problem is that the one and only way we are anywhere, remotely, even on track to think about finding a cause, let alone a cure, is by way of genetic testing and a prenatal test. Essentially, the idea is that an unborn baby could be tested for his genetic risk toward developing autism, and parents would have the choice to abort. We have this ability with Down Syndrome, and the reality is that over 90% of fetuses known to have DS are aborted. Why are we kidding ourselves into thinking we’d see anything different with autism? I very well may have never had the chance at life. I very well may not know some of my amazing friends, some of whom can speak and others of whom cannot.

The thing is that, had such a test been available in 1987, my parents might have learned that I would grow up to need a feeding tube, IV support, have an ostomy, and an insulin pump. They might hear that I would be in constant, intense pain, that I would spend a lot of time in the hospital, and that I would need multiple surgeries and deal with severe fatigue, autonomic issues, fragile skin, joint pain, and be almost unable to eat. But, no prenatal test has the ability to tell my parents that I would love kitties to the extreme, write books, speak at national conference, earn my Master’s, or find a way, despite it all, to live independently. They would not know that I would have a deep, abiding faith and uncrushable joy. The tests can tell you all the bad, but they cannot and will never tell you anything about the good–the person.

I don’t for a second stand in the way of easing suffering, but my faith and my belief that my life is worthwhile, even with all the crap my body throws at me, mean that I will not stand in support of a test like that. Please don’t throw accusations of “not knowing what real autism is like” or being a “quirky genius” at me, as if I don’t know pain, rejection, and isolation. I don’t want anybody to suffer, and it breaks my heart when I see kids in crisis. I’ll do whatever I can to make good on my promise to help anyone who asks. Know that when you support a cure, in its current realistic possibility, and the organizations who are working toward it, by default, you’re supporting a prenatal test. I hope that, in the future, we have a way to ease suffering without undoing life. Until then, I’m glad we don’t, because no pain makes the joy not worth it.


Tests could tell you that all of this would be a part of my life...

Tests could tell you that all of this would be a part of my life…

... but not about the joy of having the cutest nephew in the world!

… but not about the joy of having the cutest nephew in the world!

...and not about writing my own books!

…and not about writing my own books!

... and not about friendship like this, or the Disney trips it would involve!

… and not about friendship like this, or the Disney trips it would involve!

... and not about autistic community like this!

… and not about autistic community like this!

... and not about faith like this.

… and not about faith like this.

I’m Not Your Inspiration

Early in my public appearances in relation to autism and my work in the field, I heard one message repeatedly: You’re so inspiring!

Inside, I cringed.  When you meet someone with a disability and tell them that you’re inspired by their very existence, it sends some pretty gut-wrenching messages.  You’re telling that person that when you imagine being in their shoes, you probably wouldn’t find it worth getting out of bed in the morning.  You’re saying, “You really have it so bad that you’re a brave soul just for getting dressed and leaving the house.”  You’re insinuating that the person is somehow remarkable for doing very everyday things.

Listen, when I write or get up and speak, I’m just doing what I do.  Your work might be in an office or a school.  Mine is behind my computer and interacting with people.  I’m doing what I do best in a way that I hope will benefit others with the mind I’ve always had and the only body I’ve ever known… just like you do.  How would you feel if someone said that they’re inspired that you have the gumption to live a public being as short as you are, or that they’re inspired by your willpower to walk from here to there?  You’re just doing what you do with what you’ve got.

When you post a meme of a person with Down Syndrome accompanied by the text “the only disability is a bad attitude,” you undo all the work I do every day.  Disability doesn’t mean that anything is wrong with anybody.  It means that a person has a mind or body that works differently than the majority of minds and bodies in his society.  So, in this world, autism is a disability mostly by way of the fact that approximately 98% of people are not autistic.  But, if the “only disability is a bad attitude,” then why should a boss provide accommodations for a blind employee?  Just think more positively, Pete, and you’ll be able to do your work!  Why should a school have IEP plans?  A hip-hip-hooray or two is all that’s needed for any student to succeed!  And, to paraphrase the awesome disability advocate Stella Young, when a wheelchair user approaches a staircase, a big smile is totally going to turn it into a ramp.  Right?  

No.  Disability is a cultural construct, but that doesn’t make it less real.  Accommodations are absolutelytotallyandcompletely necessary.

How about the meme with a person with prostheses running and the statement that “your excuse is invalid.”  It reminds me of 10th grade gym class, when the day came, as it came every year, that we had to run a timed mile.  I had gym first period in the morning.  I’ve had type I diabetes since age 3 (and now approximately a zillion other illnesses), and that morning, my insulin pump site had a kink in it.  My blood sugar was 590-something, which is critically high.  A normal blood sugar is 70-100, though type I diabetics are well-acquainted with numbers far outside that range.  Above 350, I run IV fluids from home, and above 1000 is “incompatible with life.”  I was 970ish when I was diagnosed.

So, anyway, my gym teacher told me that if I didn’t run my mile that day, that I would get an automatic fail.  I ran it during my lunch period… which meant no lunch.  And I hadn’t had breakfast because of the super-high blood sugar, and I was still very high.  But I was ranked first in my class of 550 students… I wasn’t going to lose my rank because of a damn one-mile run.  So I ran it.

And, halfway through, I collapsed on the track.  The gym teacher didn’t even stop the clock and didn’t come over to check on me.  I finished. the. freaking. test.

Though the horrible quip about my excuse being invalid wasn’t on my mind at the time, isn’t that exactly the kind of behavior it’s supporting?  It’s saying to ignore any and all signs that maybe you should stop doing something, that maybe it’s time to take another direction, that it’s okay to say that something isn’t safe or otherwise okay in a given moment.

It’s also saying that disability is never an okay reason to say that I can’t do something.  It’s saying that accommodations are not necessary, that people should just try harder and do the thing.  If a person with a mobility disability cannot walk, it’s blaming him for it.  If an autistic person cannot speak, it becomes his fault for not working hard enough.  

Finally, it’s sending the able-bodied person the message that, dude, at last you’re not this effed-up.  If this seriously broken person can do the thing, then certainly you can do the thing.  It’s making you feel better about yourself and your circumstances by feeling pity for someone else… not okay.

I still interface with the public with respect to autism advocacy, but I’ve learned that there are things I can do and say that encourage people to be inspired by things other than my disability status.  I don’t ever want people to hear about my health battles or autism and think to themselves, my goodness, if that girl who is that broken can write and speak and get her Master’s and so forth, and I’m not nearly that messed up, then surely I can do it. 

What I do want is for people to meet me and think to themselves, holy mackerel, that girl is on fire!  She’s enthusiastic, kind to others, and passionate.  I want them to admire my faith, peace, hope, and joy and get the message that those things are theirs for the taking, too… and not pity my circumstances to feel better about themselves.  To encourage the reception of the right message and not the wrong one, I balance the time I spend talking about disability and the time I spend talking about other things, like faith and mentoring and passion.  I broaden my message to reach people on a basic level of humanity instead as often as I can, and I try to make the connection that autistic people are first people without any qualifiers.  Yes, autism is part of my identity, but my humanity comes even before that.  I have to both explain that autism makes my experience very different… and share the ways that it really doesn’t make me so different, after all.  It’s a balance, and not an easy one.  Following a presentation, I connect with people not just about autism but about almost anything… sometimes, I pull autism back into it, since that’s the reason most people meet me, but it’s not the absolute focus of every conversational exchange.

People still tell me they’re inspired, but it’s a very different message.  They follow the comment with things like “….you’re so passionate about what you do,” or “…your faith is incredible” or “…it’s awesome that you’ve followed your dreams.”  The last one, I still qualify… I don’t follow my dreams at all.  If I did, believe me, that I wouldn’t be here and I wouldn’t even be alive.  I follow God’s call on my life, which is utterly different than following my own dreams.  

But, that’s a qualification I’m happy to make.  I’m happy that the adjustments in the way I present and how I engage with people sends the message that the inspiration really has little to do with my disability… and everything to do with what I know to be God’s redeeming work in me.  I often say that if you’re inspired by anything I say or have done, then your inspiration is not me at all but God.  He’s the one who pulled me out of the muck and mire, out of the darkness, and into His marvelous light… and this amazing journey.

The View from the Mountain

I know that my recent post on Freshly Pressed (which, by the way, was downright awesome and I thank WordPress!) has drawn a lot of new readers who may not know my story.  Lesson one in Lydia writing is that everything has a back story.

The background is that I’ve been in a nursing home for fifteen months.  I have complex medical issues due to what we can best guess is mitochondrial disease.  Essentially, my mitochondria (which turn food to energy) suck at their job, so my body suffers from extreme lack of energy.  Some of the results of that are a clear connection, such as the fact that I can sleep for 15 hours and still be exhausted.  Others may take a moment of thinking… like, for example, my organ systems suffer the same lack of energy, so those that use the most (GI, endocrine, eyes, autonomic nervous system) don’t work very well.  I have a feeding tube, an ileostomy (like a colostomy except I don’t have a colon so it’s my ileum, or small intestine, connected to my abdominal wall), an insulin pump due to almost life-long type I diabetes, and an IV port.  My kitchen has almost no food, but every cabinet and drawer plus eight more drawers standing in the corner contain medical supplies.  Autism + having to manage THAT?  That’s why I was in a facility–I wasn’t able to do it.  We’re confident that I can at this point, so, I moved into my own studio on Monday… 

Now, I spent the last year or so writing a (non-autism-related) book about my testimony and my journey, and while I won’t go into detail here (yes, even I know, sometimes, when to skip certain details for the sake of brevity!), I will say that one of my big struggles as I concluded that book was unifying my story.  In my mind, I had an autism story, and I had a medical story, and I had a recovery-from-mental-illness story, and I had a faith story… but, I didn’t know how to unify those.  Who am I–Lydia–not from an angle, but straight on, as a single story?  As a Christian, my belief and my answer to that question is that the way Christ sees me… that is the one, true version of myself… that is THE story.  Autism and writing and recovery… those are all things that God either created me to be or allowed in my life and used them for good… but they cannot be THE story.  So, you come for an autism blog… but autism is not the end-all of who I am, and my life has plots in which autism does not play a part, so sometimes, you will get tastes of other things.  I come here, at times, to process, and sometimes, the processing involves other aspects of life, because I cannot just leave them out.

The last fifteen months have taught me lessons I never expected but yet desperately needed to learn.  One of the most life-changing things I know, and when I say know, I mean that I know it in the sense that I’ve lived it and not that I believe it’s true… I know (that I know that I KNOW!) that things like joy, and hope, and peace, and purpose, and freedom are not circumstantial.  At least, they cannot be if we want them to be abiding.  In order to bring those things wherever you go, into the valleys of life, they have to come from inside of you and not outside circumstance.  If you depend on external situations to be your joy, or your hope or your freedom, then you will lose them over and over again.  But if they, if He, is in you, then you will carry the one and only Source wherever you go.

When I’m on one of life’s mountaintops as I am right now, it’s easy to feel like I’ve reached a pinnacle. In some senses, some parts of my journey, have reached a beautiful closing.  I mean, I cannot contain the sheer joy at being in my own space into little black words on a white background.  Music is the best way to capture my emotion, and I play it constantly and sing and worship with every new song that pops on (which I couldn’t do in the facility much of the time because of my elderly roommate).  But, even from this miraculous view from the mountain, in which I look around at where I’ve been and feel the exhilaration of the closing of those chapters and the possibility at what lies ahead, assured that God has control over every new thing…  I have to remember that becoming like Christ is a lifelong process, and that, if I let Him, God can take me ever deeper in knowing Him. It’s a scary thing to pray to go deeper when you’re up so high, because going deeper involves things like discomfort and struggle. Still, So, even from the mountaintop, my prayer comes from one of my favorite worship songs…

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

(Hillsong United, “Oceans”)


Short and sweet and life-changing

I found myself doing my laundry in the kitchen sink (just necessities, because I was so exhausted from moving this week that I just couldn’t deal with machines and the wait time for washing and drying)… and in order to make it tolerable, I thought to myself, well, it’s certainly a fun sensory experience at the least! That’s how I deal with life. When something sucks, I find whatever sliver of fun or good in it and run with it… I hate taking my trash to the dumpster, so when I do, I make sure to get a huge swing and throw it way up, over my head (I hope it never explodes or anything while it’s up there!). I always hated scooping the little box, so I decided that I was digging for treasure as a kid. I even take it so far as to choose to focus on the aspect of changing my ostomy bag as a craft project… there’s cutting and putty involved, to give you context, so it’s not a totally random connection. No matter how much you dread a task, if you find SOMETHING in it that appeals to your nature and things you enjoy… well, you might find yourself doing a jig when you have to scoop the dog poop! Okay, maybe not, but a little chosen perspective can have a big effect on those dreaded little daily tasks.

If you’re laughing at me (and I wouldn’t hold it against you if you are!)… just remember that I’m digging for treasure, doing crafts, and playing in suds… while you’re still focused on bending, sweating, and stinking. I’ll keep my way…



The whole idea of being defensive both plagues and confuses me.  From a very early age, during discussions or disagreements with my older sister, she will come out with, “Geez, you don’t have to be defensive!  You always get defensive!”  And, honestly, it’s meaningless to me.  Am I defending what I think is right?  Well, yes, but why wouldn’t I, when I believe what the other person is saying is wrong?  Why is it defensiveness and not just disagreement?

One issue is that I tend to appear more socially in-tune than I really am.  If I’m feeling decently (if I’m not, I’m extremely withdrawn and quiet), I’m bubbly and enthusiastic and full enough of spunk and gumption to share with any who might need to borrow some.  I think the total joy for everything that is life tends to make me seem younger; people often ask what grade I’m in, and I’m 26!  I am, truly, introverted.  I always liked the explanation that extroverts spend time with others so that they can be alone, while introverts spend time alone so that they can be with others, and I totally and completely fall into the latter category.  But, being introverted doesn’t mean that I don’t get really super excited about all sorts of stuff!  So, the desire to connect and passion for certain subjects tends to give others the idea that I have a good idea of what’s going on in social terms.

Except, I don’t.

I do a lot of checking before I speak.  Today, while we moved my stuff to my new apartment from the nursing home where I’ve been since March of 2013, I asked about 52,000 times what I could do to help.  Was I in the way?  Could I help?  How should I help?  Am I being lazy?  I often get blamed for “just standing there” but the truth is that I am often oblivious that others are doing something with which I can help.  My spirit is ready and willing to serve others, but I lack the ability to understand the social setting and how I can be a part of what I don’t even know is going on.

I also interrupt quite horribly.  Listen, I totally get that the tempo of conversation is as natural to you ask putting one foot in front of the other.  But just like some people have to work for every single step and go through a huge mental process of planning each footfall, so does conversation feel unnatural to me.  I have no idea when you’re finished, when you’re taking a breath, when you’re pausing to think… no idea at all.

So, when it comes to defensiveness, I can’t seem to find a pattern or an algorithm to figure out what is being defensive and what is disagreeing.

In the car last week, my sister was saying that the people in the small town where my nursing home is probably weren’t too thrilled when they cut down 12,000 acres of apple orchards and built a massive housing complex with million-dollar homes.  I totally agree.  Then, she said that the homes here were “like $100,000,” and, well, that’s where I got stuck, cause I’ve been all throughout all the streets of this town and I’ve seen maybe one home of that price.  Most are really nice.  My understanding of defensiveness to that point was something like “taking personal offense to a nonpersonal attack,” and when she accused me of “being defensive” about the housing, I got lost all over again… because I really don’t give a darn about the price of homes.  Like, at all.  I’ve thought about house prices all of three times in my life, so, why on earth would I act defensive about this?  I was arguing about a fact, and I don’t see what good it would do not to argue for what is true.

It’s totally not an attack on my sister whose good-heartedness far outweighs any nitpicking; this is just the freshest specific example, in which my sister happened to have a role, of a lifetime of not getting it.  It’s confusing.  Social stuff is CONFUSING.  What is all the more confusing is that, among the autistic community, I never get any of the flack I get from (some) typical people.  All autistic people do not socialize in the same way, believe you me.  We bonk into each other all the time with unique styles and misunderstandings.  But, we either say, “Can you not do that?” and the other person, with no offense taken, says, “Oh, sure,” or we just let it happen and don’t really attach any emotion or frustration to the other person’s oddity.  I have friends who will say hi to me 7 times in 24 hours without ever really wanting to talk further, and friends who don’t see the need for the niceties of chatting, and friends who chat for a while then disappear then jump back in where we left off two hours later.  Are these my style?  Nope.  Does it matter to me or annoy me that it’s theirs?  Not at all.

One thing I realize clearly is that I have to be careful not to put being right ahead of being kind.  I always say that, like any good spectrumite, my favorite word is “actually….”  Sometimes, in my quest for correcting wrongs, whether factual or matters of justice, I accidentally lose sight of the fact that a person is behind it.  And, when I hurt my friends, I feel really bad.  I tend to think that, since I would certainly want to know if I created a Facebook page with a grammatical error in its name, that the makers of the page would want to know that, too.  But, sometimes they don’t, or sometimes they feel really bad when they find out, or sometimes, it turns out that they’re well aware but Facebook makes it so they can’t go back and change it and now they’re stuck.  If the page is a one-person mission to spread joy to kids with illnesses by sending handmade cards, well, maybe I should keep my grammar editing to myself, because, maybe, just maybe, there are things more important that being right… even when it comes to grammar!

Don’t get me wrong, though.  I’ll still twitch when I see a possessive where a plural noun should be.

But maybe the NT social police could meet me halfway.  I’ll let your crappy grammar slide, if you agree to take the words “defensive” and “interrupt” out of your vocabulary, because telling me eight times in a day that I’ve interrupted, that I always interrupt, that I have to stop, that it’s rude… really just makes me feel bad about myself, kind of like it would make you feel bad if I edited every email you sent me or cut you off every time you mispronounced a word, ended a sentence in a preposition, or incorrectly attribute a fact to a source.

Cause, actually… that would be good for both of us!