When nothing’s really wrong

When nothing’s really wrong
But nothing’s really right.
Pounding head and burning eyes.
Am I happy?
Will I cry?
Or is it just a sneeze?

My words sit uneasily
Within my heart and head.
But, where can they go instead?
Once expressed,
Carefully tread,
Too much, too much for me.

A voice within my fingers
Inside creates a song.
I say farewell these words, so long.
A thought ineffable,
Nothing’s wrong.
But then, nothing’s really right.

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Don’t we all?

I’m hoping that typing this out will help me figure out what I’m feeling.

I suppose I’m feeling something of an assault to my own right to existing as a person; not a physical person, mind you, but more like my own person.

Before I even get started with the story, let me make my usual disclaimer.  I do not in any way seek to speak for autistics, as a group.  I speak for me and only me.  Secondly, in no way whatsoever do I blame or even have ill will toward the people involved.  I am certain they meant me no discomfort.  I can’t even say that I’m uncomfortable… I’m just thinking out-type (you know, as opposed to out loud?).

As per usual Wednesday mornings, staff and I went to church for the huge women’s bible study.  Think a hundred women (which means lots and lots of chatter, which when combined with the fluorscent lights makes Lydia want to disappear, you know?).  But really, I haven’t found a woman in the group who isn’t nice.  I only really know maybe a dozen, but today when my staff locked her keys in her car, one of the ladies I kind of know offered to drive us downtown (45 minutes away, easily) to pick up keys from her husband.  Luckily, the music director at church, who is a man and stronger than staff and I, figured out a way to open the door, and all was well.  But yes, people are much, including these women, are really, really nice.  Not fake, not at all.  Genuine as can be.

When we’d first realized the keys were in the car, which was locked, we went into the office.  A lady in the office (I know who she is but don’t want to identify her) said that she heard I’d given a fantastic presentation Monday and wondered if she could just see my new book.  I handed it to her, and she said that she knew nothing about autism and what were the symptoms?

I explained the triad of impairments (social, communication, behaviors/interests).

“Then you must do really well because you seem fine to me.”

With that, I launched into my usual explanation of how trust me, that anyone who knows autism can tell, and that people who don’t know autism can tell after some time with me, and that really, I’m great at “faking it” for short periods of time, like I was right then.

“Don’t we all fake it?  Sometimes if I’m sad I come to work pretending to be happy.”

That’s what sat wrong with me.  I couldn’t figure out why.  I thought, and thought, and thought.

And then I realized… it’s one thing to say, “I feel sad but I will act happy.” But to say, “I”m autistic but I try to act typical” is completely, totally different.  It’s denying what you feel (I feel ugly, I feel like having three gallons of ice cream, I feel angry at you)… versus denying who you are, often to avoid discrimination.

I’m partially black, but I’ll act white.

I’m gay, but I’ll act straight.

I’m Jewish, but I’ll act like I’m a Christian.

It makes me ache for people who, throughout history, had to deny their identities.  I don’t at all mean that we’re past all that kind of discrimination now.  People are turnd upon for their skin color, sexual orientation, and faith everyday in this world.

And that’s what I do everyday, also to avoid stereotypes and discrimination.  I’m autistic, but I act typical.  You might say that it’s a choice… but I know how I’m treated when I act like “me,” so if I want to fit in, I have to act.

The question remains: Is it worth it?

Everybody has 2 cents

Big, huge disclaimer: Skip this if you’re tired of hearing this!  As always, I can only write about my experience.  Not only am I not other people, but I don’t have the theory of mind to be able to imagine how other people feel.  Forgive my apparent self-centeredness, but, well… I’m writing about MY experiences, and only mine.  Now…

Back in August, Rob Rummel-Hudson wrote this post on his blog.  He writes about a mother, who, looking for a brief respite, goes to see a movie and then, a few minutes in, that movie uses the r-word and a negative portrayal of Down syndrome.  And see, this mother has a child with Down syndrome.  So, her innocent evening is trashed by the movie’s attempt at humor.

And then, about a week later, Zoe wrote this post on her blog.  She expresses her… oh no, feelings word… discontent? frustration? anger?  I’m not sure!… at Rob’s taking the perspective of the parent.  Why should a parent be offended by such a comment, when no one really ever considered, “How would a person with Down syndrome feel?”  After all, some people with Down syndrome and intellectual disabilities like to laugh, like to see movies, and like edgy humor, too.

Me?… well, about that.

I find that I get quite a bit of attention, generally speaking.  When I go to church, for example, total strangers come up to me, sit beside me on my couch outside the main room where the service is, and chat with me (you know how I chat, right?).  And then, as for people who know I have autism… if I wince, they ask if I’m okay.  They ask if it’s too loud.  They ask if they’re talking too much.  If they need to slow down.  If I need a break.  If I want the lights off.

And, being that I don’t go to church without Mom… where is she?  She’s usually nearby, keeping half an eye on me, but being Mom and chatting it up with other people.  (Once or twice a month, Mom does greeting at church, so she has plenty of opportunities to chat!)  I can hear just about everything that goes on.  Sometimes, rarely, someone asks her how she is.  But no, “Are you stressed?  Are you worried?  Are you overworked?”  No, “Do you need a break?”  None of that.  And I worry about her, because while it feels like dozens, hundreds of people watch out for me, well, who’s watching out for her?

I believe that Rob’s scenario was basically on point.  Rob is a parent, so he considered the parents’ perspective.  Zoe is an adult on the spectrum, so she considered the affected person’s perspective.  This is only natural.

Perhaps (I could be entirely wrong) Zoe and other self-advocates believe that it is for us to discuss the offensiveness of such language as was used in the movie.  Not our parents or anyone else.

That leaves me feeling (here we go again with the feelings)… left out.  You see, I can say absolutely whatever I want from my keyboard.  But as soon as I’m out in the real world (unless I’m at a speaking engagement, where I seem to do quite well as it’s quiet, one person at a time, and I have my computer in front of me to sort out my thoughts), I can’t advocate.  I can’t understand what’s going on around me, so I am unable to speak out.  And really, there’s only one other person who I trust and want to advocate for me in these circumstances, and that’s my mom.  Who knows me better?  I can’t think of a single thing that my mom doesn’t know about me.  Who has spent more time with me?  (My cat is probably second in line on that).  Who is more familiar with what autism means for me, day to day, minute to minute?

My mom deserves so much recognition.  She deserves an award.  I wouldn’t be here without her, to be frank.  I’d be in some sort of state care home.

And so, Rob’s recognition of how the parent feels when her child with a disability is bashed… I think it’s valid.

But don’t run off on me, because I also think it’s necessary to consider how the people with disabilities feel.  It’s essential to recognize our humanity.  Now, I don’t get wrapped up in semantic battles on person-first language and all of that… I don’t think it’s necessary… but I do believe that we with ASD are far more like our fellow humans than we are different.

As I’ve written before, we exist not only on an autism spectrum but on a humanity spectrum.  Who is blue to call yellow unnecessary in the rainbow?  Who is red to tell purple it’s overkill?  Who is green to tell orange it’s overstepping its bounds?

Awareness.  Understanding.  Acceptance.

All in

I went to church with my upstairs-neighbor today.  It was a small church (say, 100 people at each of the two services), and the pastor and his wife have a teenage son with Asperger’s.  I got to chat with lots of people (“chatting” for me consists of answering direct questions or trying to smile, though often when I think I’m smiling, I don’t look like I am…), including the small group leader and the pastor and his wife.  I was briefly introduced to their son, but, well… as you can imagine, there was “hi” and that was it.  I was overwhelmed by the noise in the room full of people.  He was off to do something else.

Anyhow, the sermon was about the concept of being “all in” for God.  The pastor frequently referenced poker, and explained that there are two distinct reasons why someone would go all in.  They are either desperate or have decided that it’s the best investment they can make, with full confidence.

And I thought about that.

We looked at parts of Psalm 18:

I love you, LORD, my strength.

The LORD is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield[b] and the horn[c]of my salvation, my stronghold.

I called to the LORD, who is worthy of praise,
and I have been saved from my enemies.
The cords of death entangled me;
the torrents of destruction overwhelmed me.
The cords of the grave coiled around me;
the snares of death confronted me.

In my distress I called to the LORD;
I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.

He reached down from on high and took hold of me;
he drew me out of deep waters.
He rescued me from my powerful enemy,
from my foes, who were too strong for me.
They confronted me in the day of my disaster,
but the LORD was my support.
He brought me out into a spacious place;
he rescued me because he delighted in me.

Did you catch that bold part?

I’ve asked that question to myself many times, and I’ve even posed it on here.

Why did you rescue me from the depths in which I lived?

I know when and how… but I was left to wonder why.

And now I know.  He rescued me… because he delighted in me.

So much cooler of a reason than I could have even imagined.

And you know what this means, don’t you?  God delights in you.  In your beauty, in your words, in your relationships.  He delights in all of it.  I hope you bask in that as you sleep tonight and as you go about your day tomorrow, because there’s nothing better.

One (awesome!) day in the life

Saturdays are Momday.  In other words, we spend our Saturdays running errands and having fun together… the mall is often involved.

No day holds a candle to today, though.  Yeah, there was speech loss.  And I almost melted once or twice, including squealing and getting loud in the middle of the store (Mom was simultaneously on the phone with Sister and trying to tell me to hurry up making up my mind.  Uh, I needed her help!  I was stuck!).  Oh, and I didn’t even step into the main room of the church service today.  I hung out on the couch outside, where the music is quieter and the lights are fluorescent.  It… helped, sort of, I guess.

But forget all that.  I’ll never remember those things, anyway.  They’re just part of my personal brand of autism, and they come with more days than not.  So be it.  Not gonna get me down.

Mom came over around noon.  We stopped to eat, and I got the usual.  Then, we headed to the zoo to see the tigers.  Mom mentioned that it was supposed to rain, and that maybe I might choose somewhere else to spend the day.  I had asked if we could go to the Disney store for my birthday, as they closed ours and now we have to go an hour away with lots of traffic to get to one.  Mom said of course.

“How far away is it, mileage?” she asked.

15.

“Want to go?”

“Can I pick one small thing out for when you go away?  I can definitely not spend lots of money, but it would be hard to not bring anything home.”

She said of course, and so we went.

I was excited.  New mall, new adventure.  Neither of us had ever been there.  We had to look the Disney Store up on the directory.

Oh, the gloriousness of it.

I explored the store from top to bottom.  I aimed to pick out the perfect thing to bring home for when Mom goes away in October.  I hugged stuffied animal after stuffed animal.  I admired every t-shirt.  I checked out the Christmas ornaments.

Mom found a Pooh hoodie on clearance.  Meaning, because it’s Disney, it’s still nearly double the price of any typical hoodie (note that I avoid using the word “normal” even in reference to hoodies, anymore).  “Try it on.”  Perfect.  Mom will give it to me in December, for my birthday or Christmas.

Then, also on clearance, I found a t-shirt, also Pooh.  It’s gray and it says “Be Natural.”  It was actually a good deal.  That’s the present for going away.

Finally, I was eyeing some of the littlest stuffed animals.  2 for $8.  Then Mom said, “Or you could pick out two big ones and get them for Christmas or birthday, too.”  I knew just who I wanted… the most huggable of them all.  Pooh and Eeyore.

I hope you don’t think I’m a spoiled little brat.  I mean, yes, I might be a little spoiled… but I wouldn’t say I’m a brat.  I don’t expect gifts, by no means.   I’m crazy-immsenely grateful for when Mom does things like this with me.  I just get really, really excited over shopping.

I am a girl, after all.

But the best part, the part I would never trade, is the carefree day with Mom.  It was like Lydia Day, for no reason at all.  It was all fun, nothing to drag me down.  There was ice cream, there were shoes, there was Joann’s, and there was Disney… but most importantly, there was Mom.

Now, you can’t argue with me, can you?  My mom’s totally the coolest.

On stereotypes

During bible study on Wednesday, as we’re trying to recruit people to come to my presentation on Monday, they had my article sitting out on the table.  There was a lot of pointing and smiling and waving in my direction.

Not once, but three times, people came up to me and asked how I knew so much about autism that I could write a book, or what was my degree in that I knew about autism, or did I have a child with autism?

Uh, in case you missed the point of the article… I have autism.

One lady said, “But that’s what kids have.”  Yes, yes they do.  And then they grow up, and they become adults with autism.  Did you think we disintegrated in to thin air on our twenty-first birthdays?  Really.

But the other two said what people always say.  Always.  “You must be very high functioning then.”

I take issue with this for mulitple reasons.

First, I hate functioning labels.  They offer little to no information about skills and abilities, and they don’t do much of anything besides pidgeon-hole people’s expectations of us.  When you say that a child has “high functioning” autism, people expect that the child really doesn’t have any issues.  They expect a high IQ.  They don’t expect behavioral issues.  They expect clear communication.  As we well know, these are not always the case.  And then, when we say that a child has low-functioning autism, we expect intellectual disability.  We expect diapers.  We expect danger and violence.  Once again, this is far from true for every child.  Stephen Shore told me that functioning labels are “dangerous,” and I happen to agree with him.  I would add to that “useless” and “offensive.”  Do you want a quick way to describe your child with autism?  If that’s what you’re after, try something like, “My daugther, Lydia, has autism.  For her that means that she is aloof, not always verbal, and has extreme sensory issues.  She’s also an author and an advocate.”  Now that gives you a great picture of who I am!  Much more informative than “mid-functioning,” isn’t it?
Secondly, I truly am not all that high-functioning!  Not to mention that people who have a thirty-second conversation with me are far from qualified to make or offer such opinions.  As I’ve said, and as I’m sure I’ll say again, I’m somewhere in the middle of the spectrum, on average.  But, I can be almost anywhere at any given moment.  I generally appear much more mildly affected when staff is here and much more affected with my mom is around.  And then, when alone, well, watch out.  I can only put on a face for so much of the time, and then I have to let loose.  I don’t know what your definition of high functioning is, but in my mind, it does not include not driving, not working, and needing staff every day.  It does not include becoming a hot mess under fluorescent lights after just a few minutes.  It doesn’t include being unable to cross the street without help.  Just sayin’.

Finally, and what I was after with all this, is that their comments stem from a stereotype.  Now, they don’t know it’s a stereotype.  All they know is that they’re trying to be complimentary.  But really, what they’re saying is, “I have this picture of autism in my mind.  I imagine that autistics are (what? ugly? dirty? smelly? not intelligent? rude? silent? loud?).  Since you’re not any of those things, you must be very high functioning.”  Nevermind the lack of eye contact, nevermind the extreme reaction to light and sound, never mind the staff at my side, never mind humming to myself, nevermind any of it… I don’t fit a stereotype, so I’m not “really” autistic.

I’ve been trying to think of a thirty-second way to say all of this.  Oh, and uh, nicely.  I don’t blame these people, per se… I just think they’re uninformed or misinformed.  I want to change that.

Ideas I’ve gotten are to describe that autism is a spectrum, just like “red” can mean anything from pinkish to bright red to dark red to purplish.

Or, to say thank them and say that I’ve worked extremely hard to appear this way, but that it’s not a true picture of how I usually function.

While I see the benefits in both these ideas, they… don’t feel right.  Does anyone have anything else to suggest?

Oh, and in the meantime, I’ll offer you a replacement for if you’re ever tempted to say, “He must be so high functioning!”

Say, “He must be working so hard.”

Say, “You’re doing a great job with him.”

Say, “He’s a great little boy (or girl! I use “him” since so many of us are boys).”

Say, “I love the way he ____.”

Say, “He has so many strengths.”

Say anything.  Just don’t say, “He must be so high functioning!”

Life happens all at once

I had my first speaking engagement tonight, at a parent support group for my staffing agency.  There were four parents, my BSS, and my mom who was clicking the Powerpoint.  The power went out just as I started… which wasn’t entirely a bad thing as the room had fluorescents and I would’ve been confused and miserable… so I read by light of a mom’s iPhone.

I looked cute in my new outfit and boots I bought just for such engagements.  What, is there some social rule where you don’t say you look cute about yourself?  I deem it ridiculous, if such a rule exists.  Cause I did look cute, so there.

I have engagements coming up locally on 9/26, 10/3, and 10/10.  My BSS said I could bring books to the big annual fundraiser on the 15th… but I have other responsibilities, such as the new bible study for young women with ASD that I’m forming, and so I can’t make that.  Then, 11/4-11/6, I’ll travel to south central Ohio to present to a large group.

Oh, and I had a job interview tomorrow.  It’s at the Goodwill at the bottom of the hill… but here’s the thing.  I have a really, really hard time with those fluorescents.  Even with sunglasses and a hat, I decompensate.  I feel like I’m delirious with fever, more or less.  My hands shake like crazy.  Everything spins, my head pounds.  I don’t want to be a wimp.  I want to work.  Badly.  I just don’t think I can handle the lights.  I even have trouble with them when I’m there for twenty minutes, so how would I ever manage six or eight hours?

My mom says that, if I worked, I would have more purpose and feel better about myself and things like that.  But you know… hm.  One thing I do not feel is any lack of purpose.  I have my writing and my speaking, and it keeps be quite busy.  And also, I don’t have any lack of self confidence or anything like that, either.

I’m going to keep searching for the right job.  Maybe it’s writing.  Maybe it’s speaking.  Maybe it’s in an office.  I can’t say that I know for sure.  But, I’m going to keep looking.

Ideas welcome, and wish me luck.