The Social Side

Coming here to write this post really brings me back… as in, back to the days when I would blog to process things.  I don’t do that much anymore.  When I blog, it’s to share something, but it’s not really a means of working through stuff.  I mean, don’t get me wrong… I learn when I write.  I often learn about myself when I write my stories… but most of my processing is done by talking.  Ask the people around me if you need affirmation; their expressions alone will be all you need to know that yes, yes, this girl… never… stops…

What can I say?  I make connections through language.

Anyhow, I have this friend who is also on the spectrum.  I’ve known her for a couple of years, and we have a lot of the same goals and interests… which is great.  Sometimes, one of us gets an opportunity that they other doesn’t.  In the past, I would have been jealous.  But the neat thing is that, if she is, she sure never shows it… she is SO genuine about being excited for me when good things come my way.  And you know, when things happen for her, I get really excited too, because this girl deserves everything she gets.  She’s that awesome.  I don’t wonder why I didn’t get a chance or what I did wrong.  I know my chance will come, but if today is her day, then I’m going to jump for joy for her.

I also have this other close friend who mentioned that she thinks she may be getting married within the year.  In the past, I would have freaked-the-heck-out.  I would’ve panicked.  Change– CHANGE!  My nemesis!  I hate changed!  And honestly, I would’ve been upset that I didn’t have a boyfriend, and I wasn’t growing up, and everyone was leaving me behind and clearly I was going to be alone in my own little world of misery forevermore!

Yeah, I can be a drama queen.

So, truth: I don’t have a boyfriend.  I never have, in the adult sense.  I was “going out” with a guy when I was 18, a fellow summer camp counselor who was in his early 20s, but truthfully it was more like a middle school dating game.  In 2009, I on-and-off dated a guy in his late 20s (I was 21) for a few months.  He also had autism, which, honestly, I think for me to “click” with a guy, he may have to be on the spectrum… and this guy, he was incredible, sweet, so compassionate, and he treated me like a princess… yet, the attraction just wasn’t there and I wasn’t into it, and that was that.  That was four years ago. 

Obviously, some things have changed.  There’s the one hand, which is that I’m not sure I’m in a logical position to think about dating right now.  Who would date a girl who lives in a nursing home?  Then there’s the whole, am I even ready?  I’m a social being, for sure, but when my family comes over for a party, I’m most apt to share my slice of cake upstairs with the Goose than chat it up.  I’ll lecture you about the finer points of linguistic applications of autistic writing but… so, how’s working going, and I hear you refinished your dining room, and… the best you’re likely to get from me is, “How’s your cat doing?”  So, a relationship, like a real one?  I’m not positive just yet.

But here’s the really big thing.  Here’s the thing that I keep coming back to, even bigger than “maybe it’s not the right time.”

I don’t want a boyfriend right now.  As far as I know, I’ve never been asked out, hit on, or even thought of as girlfriend material before.  It’s never occurred to me to wonder why, because… well, I know I’m a pretty girl, and I know I have personality, and I, for one, think I’m pretty funny… so as far as guys not finding me attractive, I kind of see it as a blessing because that would get old and annoying, considering I’m not that interested.  I don’t see the lack of attention as any indication of my worth or status, I guess, and I know that, when the time is right, the attention will come.

But, you know, I am totally on board with making some friends who are boys, networking, connecting, and so forth… but as far as a serious, romantic, considering-marriage relationship goes, like the one my friend is involved in?  

I’m a little too… well, there are things I need to do, first, like, well, you know… change the world?

Yeah, that.  I’m working on it.

As far as building relationships goes, I’m content to be setting the ground work.  I’m not going to find my future husband if I don’t make friends, first.  So I’m open to making friends with guys, unlike I have been in the past.

I’m also enjoying the my new-found thing about being genuinely really excited for a friend and not immediately wondering what’s wrong with me.  People do things at different rates; part of that is because I’m autistic, and part of it is just because I’m a different person than this friend or that one.  God’s plan for my life isn’t His plan for hers, for a whole list of reasons.

Now, I’m not saying that my friend isn’t out there changing the world, too.  She changes people, one at a time, from inside out, in really big ways.  She’s the somebodiest of somebodies, if you ask me. 

I’m enjoying watch her story unfold, respecting her and respecting it and honoring God for how He’s working in her life.  And I’m enjoying doing all the same for my own.  And most of all, I’m enjoying watching how the two are intertwined… how neither of us are the same as we would’ve been without that interaction of our stories and ourselves.

 

Feeling Right at Home

Yesterday was an altogether good day.

My mom was running late in picking me up, and since I wasn’t moving very fast, that gave me just enough time to do my morning routine as I like to do it.

When I got to the house, I did what I always do… run upstairs to my room and squeal at the Goose, who sleeps on my bed.  The bonus was the pile of mail on the bed, which included a my new (pink!) sandals and a letter from a publishing company.  I had sent one of my books in last week and, whadayaknow, they liked it :-).  Looks like I have a publisher!

Even though my mom had been planning a big family/friends picnic for a while, I decided that it was my celebratory picnic.  The more people poured in (maybe about 20 in total), the louder it got in the house, and the more I kind of hid out upstairs with the Goose.

I came down every half hour or so…

While eating… “Mom, the Goose isn’t upset at all the people… she’s laying on her back with her paws up in the air asking for belly rubs.”

Mid-conversation… “Mom, the Goose licked my plate.”

While my mom was trying to tell my aunt about the publishing thing… “Mom, what if the Goose has to use the litter box?  She won’t come down with all the chaos.”

During clean up… “Mom, I carried her down to the litter… and then I had to escort her back upstairs by showing her that going around the corners was safe.”

Finally, I was falling asleep sitting up while everyone talked and people slowly began to leave.  My mom told me to go upstairs and rest and she’d get me when it was time to go.  So, I kicked off my new (pink!) sandals and went upstairs…

… to snuggle with the Goose, of course.

I was talking to my friend online on and off during the party, on my iPad from my perch upstairs, and I said that I worried everyone would be annoyed or even angry with me for being so “rude.”  I seem so very capable… and yet, when lots of people invade my house… I really get unnerved.  My coping strategies are to calm myself (by jabbering on and on about the kitties) and to make my own space.  I did come down and talk to the family on and off, but hours-on-end just wasn’t possible for me.

Even at 25, I continue to straddle childhood and adulthood at times.  In my family, I’m one of the kids… even though the youngest “kid” is 22.  I’m the only one who has done any grad school, and the only one to have books being published, yet, in my family, I’m still excused in ways that I can’t imagine an adult being excused.

I guess I’m just my own quirky self in that way, as I am in many others.

Thankfully, I’m okay with that 🙂

Defining Me

What is faith?
It’s knowing that all ability comes from God, and that my job is to hone and develop it so that, some day, I can tell the world just how good He is and what He has done.

What is joy?
It’s spending the wee hours of the morning in a half-awake state… but the half-asleep part of you is spinning, dancing, arms in the air in worship.

What is trust?
It’s wanting, of course I want, to reconnect with people I’ve hurt; but praying daily for the outcome, whatever happens and when it happens, to glorify God.

What is love?
It’s being able to say to the same people that I want them to do what brings them peace and a sense of restoration–and meaning it.

What is perseverance?
It’s messing up… again, and again, and again, and every single time repenting, never losing hope that one day, someday, you’ll get it right… even when everyone else has completely given up.

What is peace?
It’s stopping to crouch down on a curb, on the side of a quiet street, to capture the essence of that moment in your journal, because you’re so overwhelmed by the blessings that you can’t even remember your trials in that moment.

What is friendship?
It’s sharing sorrows, and sharing joys; it’s knowing that there is nothing I need from another person, but choosing to share our lives because He first loved us.

What is contentment?
It’s sharing your twin bed with two kitties for a midday nap, during which none of you actually sleep because, every time you all settle, somebody just needs to pet or be pet.

What is acceptance?
It’s loving someone as they are today, even if they never change…. for who they are, not who you hope they’ll become.

What is hope?
It’s living your story, day by day, not knowing the ending but absolutely trusting that, as long as you put Him first, then your purpose– to glorify Him– will be realized.

Connection and disconnect, or, Why don’t you mind read?

Theory of mind.  Empathy.  Mind blindness.  Compassion.

The amount of information out there on autism + the above is mind boggling, and so much of it is just infuriating.  

“They” say that “we” don’t have empathy.  “We” cry out, yes, we do, we just show our feelings differently so it doesn’t look like empathy!

“They” say we lack theory of mind, but there are countless examples… in books, on blogs, in my own life and, I hope, in yours, which show that people with autism are very aware of what goes on around them, and that often includes subtle social overtures from and between other people.

My argument, and not the major point of writing this, is that, just like typical people possess different degrees and hues and shades of empathy… so do people on the spectrum.  I’ve seen far too many examples of “us” displaying incredibly empathy, such as when my friend at the Autism Society (ASA) conference checked to see if I would be okay if she ate in front of me, which could not have been a script because they don’t teach social stories on “What to do if your friend doesn’t eat food,” right? 

But, between you and me (and the rest of the world that has ever met me), I’m not great with empathy.  When I show it, it comes from a place of cognition and not one of feeling.  The thinking comes first (“I wonder what so-and-so thought of such-and-such….”)… and the feeling follows.  For typicals, I think that process is reversed.

As my friend and fellow Aspergirl, Jennifer O’Toole, explained in her presentation at ASA, some Aspies do struggle with empathy; but our compassion is fully in tact.

I always had trouble distinguishing between the two in a meaningful way, until I realized this: Empathy is “knowing.”  Compassing is “doing” once you know.

So, say a friend has been more distant than usual.  Chances of me picking up on the cues to figure out why that’s the case are pretty nil.  Simple solution!  I texted her, “Mad? Sad? Busy? Apathetic?”  Anyone who knows me well will absolutely understand that I need to ask, or I will never respond remotely appropriately.

But, if you’re sad, or hurt, or if you encouragement?  That’s where compassion comes in, and that’s where I actually do really well.

I’ve been reading Asperkids (Jennifer O’Toole), so social skills are in the forefront of my mind and I’ve been working really hard at them.  I wanted to tell this story, even though it wasn’t one of my finer moments, because it’s a good example of how, even when I’m super conscious of this stuff, it’s unnatural for me and I still mess up.

I wanted to change plans for the next day.  I called my mom, and when she didn’t answer, I texted her, then before I went to bed I tried again.  I woke up the next morning and called.. did she hear that I do not want to spend the day outside, that I needed to stay home and get work done?  No, she didn’t, and in order to save her a lot of extra driving around, she decided she’d get me today (Sunday) instead.

I have a little sleep issue, in that I’ve been sleeping 16-18 hours a day.  Can I just say how annoying it is that I can’t wake up for anything?  I have things I need to do!  Anyway, my mom told me around 8 last night that she would get me around 8 AM.  

I was not happy, because that didn’t leave me nearly enough warning to go to bed so that I wasn’t a major grump today.  My mom told me to see if my dad could get me later in the day, and I said, “No, Mom, that’s not fair.  You messed up the weekend and it’s not my dad’s job to pick up the pieces.”

Now, okay, in my mind, that statement meant, “You messed up my sleep schedule this weekend and I feel uncomfortable asking my dad to jump in on something that should stay between us.”

Totally not how that came out.  My mom, when she got me this morning, said that my words had really hurt her and that if she was hurt, then they must have been pretty harsh.  I apologized, and, Aspie-me, “That’s not what I meant though!”

In my mind, they weren’t really hurtful.

“But that’s what you said, and you’re going to piss people off if you don’t learn to hear your words for how they sound and not what they sound like in your head.”

Oh.  Yeah.  Sigh.

Learning to view yourself as you appear to others is a really, really difficult thing… it’s like seeing photos of yourself in a bathing suit, right?  Owning your own “stuff,” something I’ve been working really hard to do the last few months, reminds me of that 360 mirror on What Not to Wear.  It’s brutal.

It’s also important for growing into the people we want to be, and that doesn’t stop when we turn 21.  For Aspies, it’s something that has to be explicitly taught, but it has to be done so, incredibly carefully, because we’re so sensitive and hard on ourselves. In the past, when someone pointed out something that was less-than-flattering about me, I wanted to crawl into a hole and die, almost literally.  Trying to address these issues with a person who isn’t ready?  I’d go so far as to say it’s harmful.  The person will get defensive, more so every time, until the very thought of a slight correction makes them shut down.

Ask me how I know.

I think the best way to work with “us” on this stuff is to model.  Yes, that means modeling when you make mistakes and screw the heck up, which is probably not your first inclination.  Jennifer’s book is a great way to indirectly teach Aspie kids (and adults!) all those things that they don’t want to hear from you.  When it’s Aspie-to-Aspie, and when no one’s there to make you feel that deep sense of shame for having done things so wrong for so long, it’s a lot easier to hear the message.  My third suggestion is mentoring, which I think it’s hugely-incredibly, maybe-the-most-important for every person on the spectrum.  Autistic kids need autistic mentors; autistic adults need autistic mentors!  If a fifth-grader can show a first-grade the way around his new school, and an eighth-grader can show the fifth-grader how to do her hair, and a senior can show an eighth-grader how to get into after-school clubs… it’s such an important cycle.  The issues of “what-not-to-do” come up in these relationships, because rather than “typical people don’t do that” (which is what I always heard when my family and friends corrected me, no matter how they said it), I hear, “Hey, kid, I totally went through that and this is what I learned.”

So, there you have it.  Connection is the answer to the disconnect.

I think I’m funny and other FB statuses

I see every opportunity in which my fingers make contact with keys (emails, texts, FB statuses…) as a chance to be creative.  Often, it’s really just a chance to crack myself up.  These are some statuses from the last few days from my personal FB page.  I’m not sure why anyone wants to be my FB friend, because I blow up their news feeds with stuff like this all the time… some combo of wise and just plain wacky.

But HEY– I have your attention, right?  This is super important… this is Nate, my new nephew.  He’s a good egg.  Everybody say aww at Nate squished little face, and then go back to wondering how I lived for 25 years with this brain, as evidenced by the following…

Image

(Awwww… right?)

“I think I think I’m funnier than I am. But I don’t really care, cause, you know, I’m here laughing, and that’s not such a bad thing, after all.”

“Come on, weather… you’ve made your point… 95 is a little melodramatic, don’t you think?”

“Hey Asperkids, thanks for the reminder that my Aspergirl need to police everybody’s grammar (and syntax and word choice and diction…), despite coming from a deep love of upholding truth, doesn’t come across the way I mean it to– it came in handy today when people keep commenting that Monsters U is a sequel… and I really, really badly want to say no, it’s a PREquel… but for once, I remembered that the Asperkid’s favorite word (which is “actually…”) isn’t as, uh, respected, in the NT world  Now, do you have any advice for hiding the twitch that results from such linguistic infractions?”

“Had trouble motivating myself to get to work on an analysis paper which asked me to analyze “cohesion, rhythm, and voice” of one writer. When I realized that I could analyze my autistic friend’s blog, and as I found that her unique use of cohesion and rhythm actually give her an “autistic accent” in her writer’s voice… well, not so boring anymore!”

“My biggest problem right this minute is that I’m too poor to re-dye my hair purple, and this bums me out. And yet, for this, I am ridiculously grateful.”

“Two songs that have been running in my head for a really long time: “La la la la, la la la la, Elmo’s song.” And, “Aba daba daba daba daba daba daba daba said the monkey to the chimp.” Someone, rescue me!”

“I am a grump-a-lump today, and with good reason, but since the only person my grumping is going to pull down is me (instead of the person I subconsciously sort of want it to affect)… I intend to head outside for some serious sunshine and turn that frown upside down. In other news, I have had some pretty wild dreams, but last night’s may take the cake. They are incredibly complex, perfectly crafted stories with loads of symbolism. What fascinates me is that my brain must plan for the symbolism, but I’m not aware of what anything meant until the end. I do not understand how it works!”

“I unpeeled the clear patch (called Tegaderm) off that was keeping my pain patch on because it was time to change it… and the sticky part stayed on me and not the patch I pulled off. I’m leaning back, so my neck is gluing to itself, which makes me tilt my chin up and down to unglue it every few minutes. I can’t decide if I’m amused or really, really annoyed. I’m leaning toward annoyed; it’s like the kid who says “it hurts when I do ‘this'” and pokes himself. Well, kid, don’t do that. Well, Lydia, go to bed so you don’t glue to yourself.”

 

Creating Joy

Life has a pulse to it, a rhythm.  I’m analyzing writing by autistic authors in terms of linguistic features so as to establish the validity of such a thing as an “autistic voice” in writing.  There are features, in our speech, such as intense metaphor and frequent neologisms that pop up in our writing too.  Whereas researchers frequently describe the traits as “barriers” to successful communication, I find that, in writing, they’re little explosions of creativity.

Autistic writing creates an unusual prosody.  My autistic life has an unusual prosody all its own, I would argue, but these days, the prosody is monotone… but it’s monotone in a way that is so beautiful so as to be endlessly pleasurable.

I write.  My days are filled with writing, from sunup (which, I’ll give you, tends to be roughly around noon) until I peel my fingers from their home on the home row, force my eyelids closed until sleep takes me away.  I write extensive research papers, like the one on autistic voice, and another on contributions to British abolition; I write emails to network with professionals I met at the conference; I wrote book proposals, because sooner or later, I need to buckle down and try to publish something; I write essays; I write book chapters, and blog posts, and poetry, and music, and if I need a break, I chat on Facebook.  For several hours each day, I put my feet to the pavement and go on a purposeful-yet-ad-lib walk, despite the heat, despite the rain.  Even there, I cannot escape the drive to write, and my journal is in my backpack, just in case.  There is always a case.

I marvel at the fact that one person can be so full of emotion and experience and connection.  At 25, I live at the intersection of gifted and gutted–at the place where I might and do hear, “You… wrote that?” and “How do you not know this?” within the span of two hours.  I’ve got the basic life skills down; heck, I even took out my own loans for grad school.  People often comment that “you wouldn’t know…” regarding the autism.  For one thing, you may not know, which is why I’ll tell you– because it’s something I want people to know.  Better you know now than in a moment of panic or social blunder, and better I tell you before you leave an encounter with your head spinning, wondering just what–who–how.– that girl can be that intense, day in and day out.  All that aside, if you don’t know, then I don’t get to be who I am, which is a ball of quirks, sure, but also an advocate and a teacher.  For all those reasons and more, it’s best that you know.

But even if you didn’t, if I didn’t tell you, you would begin to make up your own explanations.  I’m a bit of a verbal Tasmanian Devil, at times.  I spin webs of words about all sorts of subjects, sometimes because the subject requires extensive explanation, and other times simply because it’s fun.  Often, my communication has multiple levels to it; I like to say things that are incredibly precise and yet not quite crystal clear, leaving room for interpretation based on your personal experiences.  After a day with me, you would begin to wonder how one person can come up with the things that come out of my mouth, and yet be terrified of thunder and hot ovens and panic when she has to catch a ball.  My gifts are real.  So are my struggles.

After living for some time in a state of overload to the point that my verbal ability was overshadowed by my sensory processing confusion, I take great joy in the fact that, today, I can, more often than not, describe and explain my incredibly complex experiences of this world in a way that others can understand.  I want to share them with parents, teachers, and professionals so that they can have positively, communicative interactions with the autistic people in their lives.

I believe the problem, these days, in my world, is far less about getting the autistic to speak than it is about getting her, for the love of all things good, to please. stop. talking.

New writing– check it out!

As much as I wish I could get into another book on autism right now… I’m kind of in over my head between school, my book, and other writing commitments.  I do want to share some of the ideas I’ve changed and developed since I last wrote a couple years ago, though…. 

This is my solution.  I’m writing short, topical pieces.  Think of them as mini-books, or book chapters that you can pick and choose and piece together to create your own autism book, one that touches on the subjects most important to you.  You won’t have to skim through and skip chapters… because you’ll have just the parts you most want to read!

There is one on friendships, shorter than most will be, which is free, just to give you a taste.  I’m really excited about the one on feeding, because it’s such a battle for so many families (mine included!).  It includes not only information and suggestions but also explanations (why is my kid so darn picky?), resources, and a few recipe ideas.

There will be more topics on the way, and feel free to suggest things you’d like me to address.