So, you’re coming for the holidays!

1. The holidays, meant to bring immeasurable joy, are often a challenge for people and families affected by autism.  Autistics struggle with disruption to routine and change, and so while your big family dinner that you plan every year or a surprise Santa at the company party may sound great to you, keep in mind that it might be the straw that breaks my back, at least, if I were a camel.  If I respond to something in an unexpected way (by screaming, crying, lashing out, getting cranky, and so on), try to remember that the joy of the event is just completely overshadowed by the fact that, to me, it’s just wrong because it’s not expected.  Try to build in familiarity and routine into things, such as allowing me to carry a favorite item or by making a favorite food (or, for me, just give me a Diet Coke!).

2.  People with autism often have sensory issues.  As good as your singing along with the radio might sound to everyone else, it may well make me scream because it’s hurting my ears.  The lights, the smells, the textures, the sounds, and the tastes might throw me into a meltdown.  Try to keep things toned down.  Also, have opportunities available for me to engage in good sensory experiences… squishy toys, heavy blankets or pillows, or even allowing me to monopolize your family pet can work wonders!

3. Getting back to that dinner, please understand that my sensory issues just flat out keep me from eating lot of foods.  For me, it’s raw fruits and vegetables and crunchy things… there must be nary an onion or celery bit in my stuffing.  Dinners are a huge source of stress for me, because I fear how people to will react to the way I eat.  While we’re talking about dinner, keep in mind that I don’t really talk while I eat.  One thing at a time is my motto in life, and it carries over to eating.  I know you want to socialize, but your best bet is to wait until we’re done chewing… then, I’ll be happy to rattle of facts about Food Network and engage in repetitive speech about my cat with you!

4. I love presents.  Well, duh.  Of course, right?  But please remember that sometimes it’s just a little much for me to process, all those presents and all that joy at one time.  I might need to get up and down quite a bit.  My sister is fantastic at giving out one present to one person, allowing that person to open, everyone admires, do a bit of chatting, then move on to the next present.  This is great for me.  Also, when it comes to presents, can you just… get your concepts of age appropriate out of here?  My birthday presents included a doll and a Winnie-the-Pooh balloon.  I love them.  The holidays are about joy, and what better way is there to allow a child with autism to experience joy than to get him a few things that he truly wants, rather than what people think he should want?

5. I know we’ve been over this on my blog, but lest someone missed it, I would greatly prefer that you don’t shower me with hugs and whatnot.  In fact, if you touch me and I’m really not expecting it, I’ll scream and swat at you.  And you know, I really don’t want to do that.  It’s not the concept of a hug that I don’t like… I’m a-okay with that!  My body just overreacts to tactile input.  In fact, it hurts me, quite a bit.  Couple that with my impulse control issues, and, well, you get screaming and swatting, sometimes.  I’d feel really bad if I did that to you, so please spare me the guilt and… don’t touch me?

6. My family is awesome.  No, really, they are.  From Great Big Stepdad (he’s over 6′ tall!) to Itty Bitty Niece (18 m old), I couldn’t hand pick them any better.  And yet, anytime there are more than two or three people around, I escape to a nearby room and go on my computer.  The problem, at least for me, is that I can’t follow the conversation as it bounces around the room between people.  Sometimes the TV is too loud.  Sometimes I worry about the baby crying.  And so, I need a lot of breaks… in fact, for every ten minutes I’m in the room and engaged, I probably need the rest of the hour to be alone.  I know, I know; I’ve known you since I was yay high… but still, when it’s you combined with six other people, I can’t handle it.  If I’m doing my own thing, please let me be.  If I go upstairs, please don’t follow me.  If you let me have my time, I’ll come back as soon as I can.

7. I have limited verbal ability.  And so, I will momentarily chatter your ear off about Food Network facts, ask you if my cat is cute, and discuss in more depth than you ever cared to know the upcoming changing to the DSM5.  And then, if you stop to ask me a question, I might ignore you.  Sometimes I try really, really hard to be social and ask someone a question about themselves, and I think it comes off as either rude, too personal, or what have you.  But I’m trying really, really hard!  So, please talk to me like I’m as typical as you are.  I don’t like to be talked down to or ignored.  It takes a lot of effort for me to engage you in conversation, and it’s upsetting when someone is rude and shuts me down because I’m just not good enough.

8. I also have the option of typing my thoughts out to you, but I’m not quite comfortable doing that around anyone but my mom just yet.  On the off chance that I do try typing, try to be encouraging, but also don’t make a way huge deal out of it, because then I get embarrassed.  I don’t like to field 900 questions about how it works and why I do it.  If I’m typing, it’s taken a lot of courage for me to try, and it’s because I really want some typical conversation, and this is the only way I can do it.  Talk to me like you’d talk to anyone else.  Allow me time to get my thoughts out rather than interrupting my typing.  One thought at a time, please.

9. One of the standard traits of autism is that we have “repetitive behaviors.”  You might notice that I chew things, flap my hands, play with my fingers, or otherwise do unusual things with my body.  Sometimes these behaviors mean that I’m a little bit agitated or anxious, and other times they mean that I’m excited or happy.  My face is generally pretty flat and it’s hard to read my emotions that way, but you can tell I’m joyful when my hands flap a little, or you can tell I’m nervous if I keep getting up and down.  And the chewing, well, that just never stops and doesn’t mean much of anything!

10. In the case that I do melt down, please don’t try to help!  Generally, “help” makes things worse, unless you’re Mom and you know how to handle me.  Trying to encourage me, talk me down, or telling me that I’m acting immature will just escalate things, big time!  If I get upset, please just get my mom!

Burst forth my heart

Burst forth my heart.

I have discovered that there is an institute in Syracuse, NY that trains people to use AAC.

I learned to type as a young child (8 years old, perhaps) and was typing fluently and to communicate by age 10.  My family was remarking over Thanksgiving about how I had “impeccable grammar” in second grade.  That’s just how I got put together, I suppose… impeccable grammar, built right in.

I did the fifth grade typing curriculum, meant to last a quarter of the year, in a few days.

Since I can remember, I’ve been a typer.

As I got into high school, my typing moved beyond school projects and IM conversations to include letters, thoughts, and feelings.  I would make friends over IM, then see them in person and flat out ignore them, unable to speak.  It was a joke, but it always kind of hurt.

It was about that time, in high school, that I began to dream of having friends who also typed instead of spoke.  I knew nothing of autism, AAC (alternative/augmentative communication) or FC (facilitated communication), but I had a dream.

My verbal ability began to fall apart more and more in college, and it was then that the amount I typed to communicate actually outweighed the amount I spoke.  I would email and IM from across the room with Leigh… and when things really got rough, she would actually facilitate my typing, sitting next to her on the couch.  Still didn’t know what FC was… but I was using it!

Upon a weeks-long loss of speech earlier this year and the reception of an iPod Touch, I began to type face to face with people when my speech went dry.  Still, the people I typed to always spoke back.  I hoped and dreamed of typing to someone who would type back to me…

At this point, I am able to carry on conversations about, well, autism, Elsie P, and Food Network statistics, but little more.  I’m always running around with my typing asking if I can read it out loud to Mom, Sister, and Therapist.  After all, “I have a cat,” while perhaps endearing, does little to express who I am and how I feel.

I saw Wretches and Jabberers not long ago and fell in love.  And then, having gotten an iTunes gift card and download of the film for my (early) birthday this year, upon watching it… well, I cried.  And cried, and cried. It’s not a sad movie!  But, I believe that because it is such an incredible validation of my voice and my being, that the emotion spilled forth.

Full circle, back to Syracuse.  I emailed them.  I am curious if they ever bring their AAC users together to type about life.

It’s just a dream, right?  Or is it?

My heart… burst forth my heart.

 

 

You will not take my typing

Type, type, type.

Delete, delete, delete.

I type emails and posts and whatnot, and get extremely agitated and delete them.

Oh no, regression; you won’t win this one.  This is the war.  You will not take my typing, too.

You’ve taken my control of my body and mouth.  Sometimes I can’t stop screaming, and other times I can’t speak a word to save my life.  I say, “Something’s wrong here!” and “Mom?” and “POOP!” (don’t ask me on that one, because I haven’t a clue either).  As for topics of verbal conversation, I fear that I’m a bore, in that I am only able to discuss things I’ve previously written… in other words, the vast majority of what I say is about autism (the majority of the remainder is cat-related echolalia and Food Network facts).

I go from chair to floor to standing to sitting to laying to chair to floor… lights on, lights off, candle on, candle off, TV on, TV off, movie on, movie off, roll on floor again… what is it that you want from me? Why can’t I satisfy you that make my sensory needs so evasive?

As frustrated as I am, as uncertain as the future my be, I have to remember that no one, nothing, not even the regression can take my very self from me.  Whether I can spout of verbally or whether it takes me two hours and some tears to write a post, my words are mine.

I’m off to roll on the floor once again before I start screaming and crying.

But I’ve done it.  I’ve typed.

You will not win the war.

 

Hidden in my fingers

I go to church, headphones and sunglasses at the ready.  I can’t decide if I like hearing my own voice or not, with the headphones on, but anything beats the band (no pun intended… okay, so, a little pun intended…).  Not that the band isn’t delightful, it’s just loud.  And so, headphones.  Tonight the sermon is about the God of Christmas.  I try so hard to focus and process the pastor’s words, but they’re flying around the room at a million miles per hour and I can’t keep up.  My brain is singing In Christ Alone, a favorite hymn, with my fingers wiggling the words out into the air.

There is faith, hidden in my fingers.

I’ve been perseverating on Wretches and Jabberers.  I cry every few minutes as I watch it.  I asked Mom why it’s so emotional for me.  My brain is calm, but my eyes keep crying.  Is it because I have an arthritis fever?  Is it because of my ear being infected?  Is it a med issue?  Or is it just… expected?  Unable to type about it and process it because my computer is playing the film, my eyes continue to cry.

But there is emotion, hidden in my fingers.

It’s hard to explain my communication ability.  If you’re talking about objective information or even personal information which I’ve had the time to process by typing, you might be surprised how well I can speak.  Dare I say, almost typically?  That might be a stretch; I’m not sure.  But, sometimes I don’t feel atypical when I speak.  If I haven’t previously analyzed the subject matter by typing, or in any situation with more than one other person, I tend to be very quiet.  Quiet, that is, until the emotion which I cannot process becomes overwhelming, and I scream and cry and growl.  This is no rare occurrence.  Then, of course, there are the times that I am completely nonverbal.

Regardless, there are words, hidden in my fingers.

I often don’t appear that I’m paying attention.  And, truth be told, sometimes I can’t make sense of the world around me.  I tend to pick out bits and pieces and string them together in such a way so as to make sense to me, but your original meaning might get lost in my stringing.

There is always intelligence, hidden in my fingers.

I never knew I appeared cold and emotionless, especially toward others.  Apparently, my inability to engage in small talk comes across to the world as being uncaring.  The truth couldn’t be further form this.  Sometimes, I care so deeply that I can’t even look at a person.  Verbally, I might show love by repeating myself or saying “hi” a hundred times.  I can’t ask how are you, and I can rarely say I love you to other people… and so, I say hi.

But if you listen, there is love and compassion, hidden in my fingers.

I don’t process much when I’m not typing.  Often, I feel like I am at the whim of my emotions, which make no sense to me.  I’m crying.  But am I said?  What caused the tears?  I can’t say, because I don’t know.  A whole day’s happenings build up inside me, and they need a way out, but without my laptop (my iPod is good for basic communication, but I am less than eloquent on it), I am unable to understand the world.

There is ability, hidden in my fingers.

 

Though my voice
Does not have the words
To strike up a conversation,
My fingers hide friendship.
Though my ears
Do not hear,
So that I can make sense of the world,
My fingers listen so that I can understand.
Though my eyes dart back and forth
Rarely pausing to meet yours,
My fingers can see within,
And know a person’s heart.
Though I might never
Ask you how you’re doing today,
If you type to me,
My fingers will join you
In both the good and the bad.
Though you would not expect,
From such a quiet girl,
The hope and dreams
To change the world
I will do just that,
From behind my keyboard,
With my fingers.

A numbers post

Although I will not technically turn 24 years old until December 9th, at 5:48 PM, we celebrated with my family last night.  Sister and Brother and the Inlaws are all in town because of the bird, and since I never get to celebrate with Sister, I asked if I could have a small party.  So we did cake and ice cream, dinner, and presents, and I even got a balloon.

One of my gifts (no, this is not all about the gifts, but one of the gifts is pivotal to what I’m trying to tell you, so please stick with me…) was an iTunes gift card from my inlaws (and no, they’re not actually my inlaws; they’re Sister’s.  But if Sister’s mom is my mom, why is her mother-in-law not my mother-in-law?  So, they are my inlaws, too).  With that gift card, or rather part of it, I got Wretches and Jabberers.

This means that you may be getting lots of W&J inspired posts for a while.  It’s a fascinating film, and I learn new things each time I watch it.  I am so inspired by Larry and Tracy.  Aren’t you?

Today I noticed that, when they are in Japan and are asked whether they had all this inside them before they were able to type, Larry and Tracy concurred that the “beast” of autism had trapped thoughts, thoughts they’d long had, inside of them, without a way to communicate.

And so, I was thinking to myself, what was I like before I typed?

I learned to type when I was 8 or 9; I could speak long before that, but I wasn’t exactly able to communicate or have conversations much.  Based on childhood videos, I ignored people a lot (I distinctly remember people referring to me being in “Lydia land,” but something inside me- the autism, as we now know- kept me from shouting, “I’m right here!”).  My mom says that I would just… go away.  Oh heck, I still go away.

Anyway, although I was definitely human during that time (and deserved to be respected and treated with the dignity that every other human deserves), I was not, actually, a person.  For one ting, I could not form cohesive memories either about myself or the world around me.  Instead, I have flashes of sensory impressions that I am able to call up.  Some are as early as around my first birthday.  But, without the added memories of thoughts, feelings, and opinions, it’s hard to hold onto them.  I have no personal angle on the memories.  It’s like looking at a few dozen photographs over 21 years and trying to make sense of an entire life.

I also had little to no time continuity.  And so, my life was shattered.  I couldn’t figure out when things happened and how they related to other things.  It made for a lot of confusion, especially since I was such a sensory mess that I often couldn’t proces the world around me.

Which brings me to my next point, which was that without a way to communicate effectively, I couldn’t process the world.  I couldn’t make sense of, well, I did this which upset so-and-so and that’s why she responded like that which made me feel this way.  Instead, I screamed and cried and thought everyone was out to get me.  I couldn’t understand that my actions, despite good intentions, might be perceived a certain way which caused people to react to me.  Instead, it seemed that everything happened at random, so I never knew when someone would get angry with me or yell at me or decide they hated me.  I was lost.

This went on until I was just short of 21 years and 6 months old.

My true birthday, and the one I wish I could adopt, is June 4, 2009.  Dig deep enough, look far enough, and you’ll figure out why… it was my first blog post.  And so, it was not typing that made me a person, but blogging.  Rarely do I sit down and think, “I need to blog about this so that they know.”  Rather, I sit down and type because it is my way of making sense of the world.  99% of my revelations and realizations come through my fingers.  My fingers know things that my brain does not, to be sure.

Let it be known, please, that I still have a long way to go.  I can process individual instances at this point, if I am able to sit and type about them, but I am still not able to connect one incident to the next.  So, while I can say, “I did x, which caused you to respond with y, so then I felt z,” I am not able to figure out that the reason I did x in the first place was because of some previous event.  That still boggles me.  This leaves me with little continuity.  But that doesn’t bother me, because while I know I lack it, I also know that, with time, I’ll figure that out too.  I also still “go away” with some regularity; going a full day without going away is an unusual occurence.  When I am gone, I am not able to experience my surroundings.  On my 1-5 scale, this would be a 1… totally disengaged and within myself.  The goal, therefore, is to stay at a 2, where I can experience the world but not to the point that it overwhelms me.

Today being Thanksgiving, I’d like to end by saying that I am so, so grateful for those who have gone before me.  I am thankful for Stephen’s wall, for Judy’s Paper Words, and for Larry and Tracy’s wretchdom.  For Kari’s 5-point scale, and for Temple’s pictures.  I tell autistics younger than me that the reason I do what I do is so that someday, they can live in a world that is made for them, too.  It is because of those autistics and professionals who have paved the way that I am able to do what I do, and be who I am, and there is nothing more fulfilling than that.

Mishmash

Why do you call autism bad?
You call it such
because I cannot live in your world
like you live.
But if we lived in a society
where the goals were different…
where the end-all was to live communally,
me helping you,
you helping me,
both of us succeeding…
then would I be at a disadvantage?
You call me disabled
because I don’t communicate out loud,
but rather with my fingers.
But in a world where everyone used their fingers,
and you only had a mouth,
who would be disabled then?
You say
when I fall into myself
that I’m not trying.
You say
that I’m taking the easy way out.
I ask:
Have you ever tried to truly be yourself?
How easy is that?
Yet when I act “autistic,”
or as I prefer to say,
like myself,
rather than fake typicality,
you say I’m taking the easy way.
I understand
that the reason you think it’s easier
is because it might be that way for you,
and you can’t see my point of view.
Here I am,
seeing your perspective.
And yet
I am the one who lacks theory of mind?
and I am self-absorbed?
You say, “She had so much potential,”
because you wanted me to be
a doctor,
or a teacher,
or something else “successful.”
I ask you,
why you think that potential ever left me,
but more than than,
I ask why writing with complete honesty,
being exactly who I am,
is not successful in itself?
You call me frustrating
because I don’t communicate like you do,
because instead of speaking in sweeping generalizations,
I say what I mean,
and mean what I say.
Has it ever occured to you
how immensely you frustrate me?
I don’t give up on you, though,
so how about giving me another chance?

Autistically speaking

There are a bunch of little odds and ends of things I want to type out tonight, but I can’t make any of them very cohesive.

I’ve been having an increase in behavioral issues for… okay, for quite a while, but especially the last week or two.  Crying on and off, hitting my head a lot, pulling at my ears, and even complaining that they hurt.  Everyone said, “It’s just the arthritis in your jaw.”  I finally stated emphatically that I wanted someone to look in my ears if they weren’t better by tonight, and, what do you know?  Middle ear infection, complete with puss and other ickiness.

Truth be told, I’m still deciding (because you really need to have an opinion on such things) whether an ear infection or writer’s block is worse… and I’m leaning toward writer’s block.

With the behavior, other things aren’t helping… staff changeover, starting intensive physical and occupational therapy, family coming into town, birthday party, holiday… and don’t get me wrong, a lot of that is good stress, but it still affects me in some not-so-positive ways.

Even things like getting to see my sister and brother (in-law, but I don’t care about the in-law so I just call him Brother) can be cause for a great deal of worry.  What if I scream or swat at someone?  What if I ruin the fun with my behavior?

The key, I would think, is that I need to communicate what I’m feeling in ways other than with behavior.  I need to use words and typing to say, “I’m overstimulated.”  Can you ever see me pausing to say that?  It’s almost a joke.  It would never happen.  Scream?  Yes.  Bite?  Of course.  Politely interrupt conversation to excuse myself due to overstimulation?… Ha.

So I’m trying something new.  Kari Dunn Buron wrote a book for educators and the like called The Incredible 5-point Scale, in which she outlines the concept that people with autism (children, really, but we both know that children with autism turn into adults with autism), though they are sometimes unable to articulate their current emotional states in words, can sometimes reference a scale from one to five in which each number corresponds to a given state or behavior.

My scale might look like this:

Number-Feels like-Looks like.

1 – relaxed – sitting still, not talking
2 – in tune with surroundings – conversing, mild stimming
3 – slightly overstimulated – voices rises, intense stimming
4 – overstimulated – crying, saying no/refusing help
5 – melt down – screaming, physical aggression toward self or others

The idea is that rather than stepping outside my overstimulation to say, “I’m overstimulated and I do not wish for you to help me!” I can say (probably yell, of course), “I’m a 4!”

I read the book and informed my staff that “the checkout line makes me a 3!”

Gasp.  Did I just hear progress?

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.