Reprise

Have you read the post before this yet?  It’s here.  That’ll catch you up (well, only sort of, because I didn’t tell the whole story in any clear fashion, but you’ll get a good idea).

To be a little less opaque about the situation, someone got upset with me today for being selfish, when I was actually trying to be helpful.  This is not an uncommon thing to happen for me.  Between poor communication, social barriers, and behavioral issues, what I mean and what I say/do can be very different.  You see my outside, and you assume I’m selfish.  I live my inside, and I know what my intentions were.

Inside, outside.

People judge me everyday based on my outside.  I appear whiny, clingy, obsessive, angry, touchy, and so on.  I know this.  It’s not that I’m unaware of how I appear, but rather that I can’t control it.  It’s inaccurate, anyway, to call me selfish or clingy or angry… because really, I’m not.  My behavior may appear that way, but it can be a whole different story, inside.

It’s upsetting to hear that I’m selfish, or whatever else.  For so many years, having no sense of self, I took immediately to heart every little thing that was said about me.  And so, if someone said I was bad, then I took that to mean that I was all bad, all the time.

Slowly, I am realizing something.  It’s not about what you say about me.  You say that I’m selfish- does that make me selfish on the inside?  Of course not.  Sorry, but you don’t get to decide what or how I am.  Your labels don’t determine my being.  That goes for the compliments, too.  Sure, I like to hear that I’m good at something, but does that actually make me good at it?  I was already good, with or without your compliments.

This is something that people without autism sometimes struggle with their whole lives.  It surprises me, to be honest, that I’m picking up on these things and realizing them, just shy of 24, and with no small dose of autism.  But, to live a life dependent upon accolades and put-downs as a determination of your sense of self is no way to live at all.

And so I won’t.  And that’s the end of it.

Autism from the inside out

There is an epic battle that goes on inside me, every second of every day.  Autism controls my outside, but my inside is a different place.

On the outside, I yell and scream and growl and cry.

On the inside, I say, “Excuse me, but I’m getting overstimulated.”

On the outside, I call and pester Mom 900 times a day (or, like, 6).

On the inside, I just want so badly to have a real conversation with her in which I am not limited by my verbal ability.  I keep hoping the next conversation will do that.

On the outisde, I seem like a selfish person with selfish intentions.

On the inside, I care deeply about others and put them before myself.
In my mind, I am my inside.  I have trouble seeing the outside and how I appear to others.  But some people, family even, only see the outside.  I’ve been typing for so long now, communicating to so many people, that I forget sometimes that people who don’t know my typing only know my outside.  I try to type to them, don’t get me wrong, but they’re not comfortable with it, so what can I do?

Shame on them for not being willing to see past the outside and learn about the inside.

And then there are those of you who know only my inside and might find it hard to believe that I can really appear the way I do to those who don’t know my typing.  Trust me; my own family told me for many years that I am selfish, defensive, and so on, because they just didn’t know.  But now they do, at least most of them, and all is well.

Breathe.  All is well.

Rich in spirit

I have a confession to make.  And I could probably get off with no one being the wiser by just not making this confession, but that’s not what I’m all about.

Sometimes, my intentions get jaded.

The blogging gets to be about the comments.

The books get to be about the money.

The advocacy gets to be about myself.

I’ve been a little lost in terms of, what can I do?  I can acknowledge the ill-bred thoughts, but that doesn’t make them go away.

One thing I learned in DBT was “opposite action to current emotion.”  In other words, if you feel like sitting still, move.  If you feel like being quiet, shout.  You get the idea.

The opposite action rule would dictate that, when the blogging gets to be about the accolades?  Turn off the comments.

When the advocacy gets self-centered?  Work on a project for someone else in the autism community… not about, “This is what I need in this world,” but, “This is what this kid needs in this world, so let’s make it happen.”

Someone mentioned buying a book today, and my first thought, I am so ashamed to admit, was $8!  Well, let’s nip that in the bud.  “Give me your address, I’ll send you one.”  I don’t need $8.  My dog is funded.  My bills are paid.  Let’s get back to what this should be about- helping someone to help her child.

 

The meaning of moderate

I’ve typed and trashed three posts tonight.

I get so far into them, get crazy agitated, and close the window before I completely freak out.  What is this, and how soon can I make it stop?  Seriously.

So here’s the thing.  This is my space.  I get to express myself based on my experiences and my perceptions as a young adult woman (did you know that I hate refering to myself as such?  I’m still the kid, in my mind) with ASD.  It’s not always pretty, either… except for when it’s downright hilarious… but it is what it is, and I just report without judgment, to the best of my ability.  I hope you read without judgment (meaning, don’t deem my experiences “good” or “bad,” just take them for what they are) as well.

And here’s the other thing.  When you type about your experiences, you inevitably piss someone off at some point.  Someone’s going to take issue with what you say.  Usually, I try to avoid those subjects.  Tonight, I’m frustrated enough and need to express myself badly enough that I’m going to risk it.  I’m going to try to make it clear that I’m not out to get anyone in any way.  But still, please don’t take me all that seriously tonight, okay?  Just let me express myself.

I’m a firm believer that “mild” autism isn’t better than “severe” autism, and that “moderate” isn’t somewhere in the middle.  It’s such an individual thing, you know?  You might have someone who has good communication but crazy sensory issues that lead to behavior problems.  You might have someone who is nonverbal but surprisingly social and has decent self care.  And, you might someone who is fairly mildly affected all around, but is super depressed because he is so aware of his differences.  We’re all in this together.  It’s not a competition.  Support, validate, believe.

But tonight, this whole “moderate range of autistic disorder” thing is on my nerves.  Why would that be?  It’s because I’m not mild enough to just blend in with everyone else, regardless of how difficult it might be.  I mean, I kind of can to look at me, but the minute you greet me with a hug and I shout and swat at you, you’ll kind of figure that something’s up.  I’m not saying it’s easy for people with AS/HFA to blend in, at all.  I’m not even saying it’s beneficial.  It’s just that right now, I wish I even had the option.  Also, there are groups for people with AS galore in Pittsburgh, but I basically get lost and agitated in them.  The only way I could potentially participate would be to type, but they go so insanely fast that it just isn’t a good option.

And then, at least here, there are groups for people with severe disabilities.  There’s even a group at my church.  And frankly, I feel patronized, and I hate to feel patronized.  Just because I make no eye contact and repeat myself and all those things I do, it doesn’t make me five years old.  And then, there’s the issue that people who patronize me tend to want to touch me, which leads us right back to where we were last paragraph.

I’m different enough to the point that people notice and think I’m either a brat or a jerk… but not different enough that they think I might have a disability.  Last weekend when Mom was chatting with the older lady in Petsmart and I was whining and interrupting and poking her, I wouldn’t doubt that the woman thought, “What on earth?”  Or when I yell at the mall, or when I swat at the doctor’s office because she touched me.  When I interrupt or ignore (I feel like I never get in between and get it right), when I never ask, “How are you?”, when I forget to say thank you.  Brat, brat, brat.  I actually thought I was a brat for many years.

Moral of the story?  Lydia’s a grump tonight.  (I told you I can be funny).

But no, really, the moral of the story is that people need to be educated about all degrees (and that’s not really the right word… what I mean is, all variations) of autism.  About people who work their butts off to seem typical all day, then go through hell when they get home.  About people who are profoundly affected and cannot be left alone.  And, about people like me, who may not seem “disabled,” right away, but who just come across as cranky, bratty, and agitated, more often than not.  People who can be pretty verbal (or other days, not at all) but will never ask you how your day was.  Who will type books to you online and then run when they see you in person.  Who will carry on a conversation with their mothers but the second they step under the Macy’s lightning will turn into a monster.  People who wear sunglasses in the grocery store and then go silent when they get inside.

As I often say, all I want is what you want.  I want a world where I can be free to be myself.

Not so different after all.

 

Free

I was just pondering how incredible it is to be so free in so many ways.  Free to speak, free to worship, free to sing, free to be a square peg.

At the same time, I was thinking about how frustrating it is to have a body that doesn’t do what you want it to do, or in other words, to be captive.

I gave a little PSA on Facebook in anticipation for the holidays and family coming in.  My family likes to hug, you see.  And at least in recent months, my reaction to touching is either screaming, swatting, or both.  Mom’s not very big, and I don’t remotely hurt her when I do it… but it’s enough to startle anyone in the room and it sure makes me feel bad.  Perhaps I ought to feel the very worst for lashing out at Mom, but I think it would actually be worse for my in-laws or others I don’t see everyday.  And so, the general rule is no hugs, or at least not without permission.

Or, on a lighter note, how about having a mouth you can’t always control?  And no, I don’t mean cussing people out!  I mean that I’ve gone through a phase, on and off again, for more than 10 years, in which I exclaim, “O-HI-O!”  It’s part of a song which lists the 50 states.  I know about 2/3 of the list, but there are significant gaps.  Still, I prefer O-HI-O.  It just pops out, randomly.  Sometimes I also do Wy-oooo-ming! but it’s usually O-HI-O!  My therapist knows the rest of the song, so she’ll fill in the blanks if I start.  Heather can too.

Speaking of being captive, I’m getting to the end of what my fingers can type here.  They’re significantly larger than when I started typing, forty-five minutes ago, and they’re getting tough to move.  Again, captive to my body.

But I am not my body.  I am Lydia.  And Lydia is oh-so-free-as-can-be!

 

If I had a way to tell you

If I had a way to tell you
With my words then I would say
First and foremost that I love you
I’d tell you every single day.

I’d tell you how much it pains me
To whine and scream and fight,
But that I can’t seem to help myself,
In this world so loud and bright.

I’d tell you that inside my head,
There’s so much that I know,
Math and words and music,
But I just don’t know how to show.

I’d tell you how very much
A part of your world I wish to be.
But that there’s just too much going on
To join in your games, for me.

I’d tell you that I’m in here!
This, I want to scream and shout.
I’d tell you that I’m a person, too,
Of this I have no doubt.

And I’d tell you, don’t give up on me!
I have such a future bright.
But only if you believe in me,
And keep it in your sight.

I’d tell you how much more to me
Than autism wants to come through.
I have interests and desires,
I’m just waiting to show to you.

I’d tell you that I know things,
That you would never guess.
Not by voice, but hands and body,
This is how I express.

I may never speak your language,
But if you can learn mine,
I will tell you, tell you, tell you…
I tell you all the time.

“You don’t look autistic”

Well, see, I only have 26 minutes to write this post.  I can’t save and come back later, because my bug runs off and I have no idea what I was getting at.  Posting is a one-shot deal.  Set your timers.  Ready, go!

The question of the day (along with number 4 and letter P) is, what does “autistic” look like?

Does it look like sitting in the corner, screaming and banging your head on the floor?  Because, at least in public, I don’t do that.

Does it look ugly?  Why, I’m cute as can be (and, in my opinion, the VAST majority of kids with ASD are too!) thankyouverymuch.

Or how about silence?  Is autism silent?  I can be very vocal.

Clearly, these are stereotypes, and once that I don’t (always, even usually) fit.

Truthfully, at first glance, you probably wouldn’t peg me as autistic.  You might notice something is “off,” but even then you’d often be hard-pressed.  When you come up to talk to me, I can be very engaged and very vocal.  I don’t make eye contact, but I do look at mouths (they help me to hear the words), so you’d never know it.

I thought I’d give you some examples (these are only examples and do not cover the whole realm of things!) of things I do out in public that, if you’re thinking, might make you think autism.  Why does it matter?  Because hopefully, when people read this, they’ll be able to think, “Hm, maybe he/she is autistic and not just a brat,” when out in public.

So we’re at Petco, with Mom and Mom’s best friend.  Mom and her friend are talking to two older ladies about these parrots.  I make the parrot dance (if you go up and down, he goes up and down) and walk away.  I come back every few minutes to feel Mom’s nails (she gets them done so they’re super smooth), make an unhappy noise (because I want to leave), and wander away.  Rinse and repeat, oh, six or eight times.  Finally, I walk up to Mom, shove my face into her shoulder, and whine, “No THANK you.”  She knows I want to go, and that I’ve been patient (for me), and so we go.  I wasn’t just being whiny- the lights were hurting me.

Or how about we’re at the restaurant.  I let Mom’s friend (yes, I was with her two days in a row!) do most of the talking, but once or twice I shout a delayed “thank you!” as she walks away.  She turns back, then keeps going, a little confused.  As we get ready to leave, I say, “I have chicken tenders everywhere I go and these were delicious!”  Again, she’s not sure what to say for a split second.  She recovers without issue.

Sometime in the future, when I get my dog, I’ll be out in public sometimes with a cane, sunglasses, and a service dog.  I foresee the public assuming that I’m blind.  Keep in mind that what looks like blindness may in fact be autism!

People often peg autistics as inappropriate and awkward.  I can be both, but not exactly blatantly so.  If you tell me your cat died, because you said “cat” it will trigger, “I have a cat!”  I can also be a bit awkward, especially so around my peers.  I do better with older people.  But when I am, it’s usually because I’m so excited and happy about something that you kind of overlook the awkwardness.

Of course, this is all how I am on a more engaged day.  Other days, you may realize a lot quicker than something’s up, and that’s okay too.  Just please, continue to talk to me like you always would.  I’m still Lydia!