Friday, May 27, 2011

Dear Blogger (and you, too)

Dear Blogger,

It's been almost two years, and for most of that time, you've treated me pretty well.

Until recently, when you slowly stopped letting everyone comment on my posts. And you randomly shut down. And then, you stopped letting me respond to the comments that did make it through.

Blogger, you kind of, uh, well, you stink.

Lydia


It's long been time for some changes around these parts. Let me outline the next week or so for you.

1. I've switched to WordPress for the time being; find me at www.autisticspeaks.wordpress.com.

2. A friend of mine and her partner have purchased for me www.autisticspeaks.com.

3. In the coming week or so, I will... somehow, magically (this means I don't know how, but my friends do and will help me) put the WordPress site into my own domain name's site, and I will henceforth blog on www.autisticspeaks.com.

What does this mean for you? Well, you will no longer find me here on Blogger. My entire blog has been imported onto Wordpress (and there are even some cool new features over there!), so you can find everything, including comments at my temporary home at Wordpress.

Secondly, it means that you will likely only use the www.autisticspeaks.wordpress.com link for a short time.

Thirdly, and I'll let you know when this is, you will find me at www.autisticspeaks.com. My own little slice of the WWW, eh?

So, come find me; there's a new post waiting for you. I apologize for any inconvenience. I say, possibly more to myself than to all of you, to stay calm and patient and that change can be a good thing.

Thursday, May 26, 2011

Six of one...

This post is either going to come out as brilliance or total insanity; it could truly go either way. You've been warned.

I don't think in words. And no, I don't think in pictures. I think in... physical sensations, feelings, visions, shapes. So, when I hear words or read words, I have to translate into my own language, formulate my response in my language, then translate back into yours, then type/speak. You can imagine why I process a bit more slowly than other people. If I don't have time to process the words and translate them, I frequently respond inappropriately (think, "How are you?" "Thank you." or "Happy birthday!" "You too.").

Now, another thing. I don't actually write these posts. They're already written in my own language... they write themselves. I just translate and put the words down. If they're not written and I have to write them, first of all, they're painstakingly slow, and second of all, they're choppy. They feel different. I can totally understand the concept of those who wrote the Bible writing God's words down... the words were already written, and they just put them down. I'm so not saying that God writes my posts! No no no! But, I can understand how it worked.

So, back to this whole language thing. Leigh was curious about how I actually think of different people and things. So, I give you, some of my favorite people and things, in my language. Please keep in mind that trying to put entirely ineffable things into words leaves you with an incomplete, possibly not-entirely-accurate depiction of the thing in question. That frustrates me and makes me hesitant to do this, but I shall try.

Once upon a time, when I first met Leigh and for the next year or more, she was a distant orb, grayish purple, and fuzzy on the outside but solid (think the texture of dryer lint). It floated just above the ground, kind of hovering. It was hard to see, and you couldn't put a finger on it.

As time went on, Leigh became a solid, smooth wall, right up against my heart. I can't see it (it's like trying to see your own nose).

Now, Leigh dated a guy named Lee in college, and the way I could tell who we were talking about was not by name or spelling but by how they felt. Lee was a series of staccato-looking... think ski jumps, in the upper right hand corner, floating in the air. They were hard and shiny and small.

Chloe calls up the sound of walking on snow. She is decidedly pink (not sure if she even likes pink!). There is a floating shirt (short sleeved, if you wonder, and I don't know the color) floating around, too. Chloe? Shirts? Can't make this stuff up.

Sister, though by no means the least bit boring, simply calls up her second-grade school picture, and that is all.

Mom calls up a shadow that melds into me. This one makes sense, for once, because I consider Mom to be almost a part of me, and me a part of her (come on, she carried me for 9 months, and genetically I AM half Mom). It's slow and gentle and comforting.

Elsie P (because I know Amanda would ask) is two disembodied little paws poking at me. White paws, of course. This is different from "cat" which calls up disembodied ears.

Now, don't everyone go asking me what you are and what this is and what that is, because it's exhausting and taxing to put this goofy stuff into words. I fear that I didn't do it right, but I tried, and it should be at least a peek into my odd little brain.

Tuesday, May 24, 2011

Some things to know about talking to someone who types

1. Only give me one idea at a time. It boggles me to have to respond to multiple ideas.

2. Please don't interrupt while I'm typing with new ideas. This confuses me; do you want me to respond to idea 1 or idea 2? I don't think you know, really, and of course neither do I.

3. Don't get weirded out if one of us refers to "talking." I do talk. Sometimes I talk with my voice, and other times I talk with my iPod. It's all talking.

4. Don't expect a normal pace of conversation. I type fast, but not as fast as you talk. Patience, grasshopper.

5. Don't be surprised if I sound somehow different when I'm typing. When I type, I am better able to express my feelings, wants, and needs... I will tell you if you've upset me or done something wrong; I will ask you to please stop this or that; I will tell you that something hurt my feelings. This is all normal to discuss, just maybe not what you're used to from me.

6. Don't tiptoe. If you bug me or upset me, chances are I'll tell you (or, more likely, hold my hand up)... point is, you'll know if I don't like it.

7. Normal rules of conversation apply. You talk, I talk, you talk, I talk.

8. Also, just talk normally! Most (not all) of the time, my receptive language skills aren't that bad (not average, but not horrible, either). If you're going to fast or if it's too noisy for me to understand... guess what?... I'll tell you!

9. Silence is OKAY! If you talk and then it's silent while I type, please don't keep talking... this will keep me from typing!

10. If you don't understand the device (because Heather- sorry, my Heather, but that's her name- can be tough to understand), just say, "Sorry, didn't catch that" or similar. I prefer not to just let you read because that takes away my voice, but in a pinch, that does.

11. Don't talk around, over, under, through... you get the idea... me. I'm here, I can't talk. Don't direct questions to whomever I'm with, and please don't engage my mom or staff in extended conversation and just leave me out to dry. If you slow down and give me a sec, I can join in, too.

12. Please don't grab my iPod for any reason!

13. I do not like to be shown off. I am a perfectly normal 23-year-old girl, and I like to be treated like one and not a spectacle.

14. That whole finishing my sentences thing? So over that. Not okay.

15. Don't try to tell me that "it's just me!" or "you don't have to be anxious around me!" or anything similar. When I talk, I can talk. When I can't, I type. You don't need to be worried about why I'm doing what at whatever time. Most of the time, I have no idea why or when I'll have or lose words. Just go with it; that's what I do.

Monday, May 23, 2011

New rule in town

You'll excuse me if I continue to melt down while I type, won't you? 4+ hours and I'm beyond exhausted. Have been up since 5AM, spent half the day waiting (either for the doctor or for my ride) and, sorry to report but you agreed when coming here that you'd get the truth, spent the rest of the day running to the bathroom... because in the process of going GFCF, things are getting worse rather than better.

Anyway, I learned a few things from the neurologist today:
1. I CAN speak just fine.
2. It's a conversion disorder ("purely psychological," as she put it)
3. Not related to autism, because I don't have autism.

I don't care if they call it conversion, trauma, aphasia, green or purple... I want it to go away. I don't care how they treat. I don't care.

That said, I'm trying something new. You see, I type a LOT. I text, I email, I Twitter, and Facebook, and blog, and chat room, and forums, oh and my iPod... I type. Typing is my way of connecting with the world, even moreso now that I don't talk much.

So I'm going to take a typing break. Maybe if I type less, I'll be forced to speak more. Maybe I'll get so tired of my own head that I'll figure out how to speak again. After all, everyone (psychiatrist, neurologist, therapist, even Mom) say that it's all in my head... I guess we'll see.

Now; back to my meltdown.

Sunday, May 22, 2011

Call me Lydia

Labels are important. They describe a person to other people (tall, short, athletic, writer...). This is true for diagnostic labels, too, because when you say "so-and-so has autism," then the doctors have a picture painted, albeit in rather broad brushstrokes, of certain characteristics of that person. They help us get services such as the Waiver I have or IEPs or what have you. They help to explain reasons for a person's behaviors or idiosyncracies. All good, necessary things.

But labels have their place. One of my staff constantly tells me that I'm "soooo high functioning" and "you'd never even guess you're on the spectrum!" and other things like that. This is frustrating, because first of all, she's just flat out wrong. I've asked other people, and they've said she's wrong too. Secondly, she isn't qualified to give such opinions and should leave it to my doctor and therapist to discuss such labels with me. Third of all, she's the only person who says that I'm anything resembling HF, and it's frustrating to me to have conflicting opinions thrown at me.

I've been tossing around ideas of what to say to her next time she says this. I don't want to be harsh, because I was just harsh when I told her that I was uncomfortable and believed she broken HIPAA by discussing details about my case with total strangers (her answer: "It was at an autism group so I thought it would be fine."). So, I think I've settled on a response...

"I'm just Lydia, thank you."

I think that in "our world," we get so tied up in labels that we forget who we, who our kids, really are. I am a lot of things other than autism. In fact, there is a button on CafePress that I'm going to order sometime when I can spare 5 bucks (haha, I know, when that ever happens) that says "I am more than autism" and lists a whole bunch of other adjectives that also describe me. I'll put it on my ever-present backpack.

So, friends, you have a challenge. Give me 10 adjectives to describe yourself or your kiddo or your friend or whoever it is in your life that has ASD... and "autistic" (or its cousins) can't be one of them.

I'll start with my best bud who has ASD whose name I won't write in case she doesn't want all the attention ;)

She is...
SUPER smart
loving
kind
a Christian
sweet
a good daugther
always puts others first
absolutely hilarious
determined
hard working

Okay. Your turn. Go!

Friday, May 20, 2011

Let's get one thing straight

Just because I talk one time you see me, doesn't mean I'm faking it, lying, being a brat, being willful, pretending, or anything else along those lines if I'm not talking the next time you see me.

How often do you see skills come and go in people? You can hit the high G some days but not others. You take a typing test but scored 90 WPM today instead of your usual 110. You do a magic trick but it didn't work right the first time around, like it did yesterday.

So how come when I can speak one day and can't on another day, I get accused of all sorts of things? My words are no different than any other skill. Just because for most people they are a constant thing does not mean that they are for everyone.

For the sake of argument, think for a minute as to why I would pretend not to speak. I love to talk, when I can. I love to share information and learn! What gain would there be in not speaking? In looking like a (insert negative word for being different here), when you know how much I like to blend in?

Is it possible, at all possible, that maybe I "faked it" so hard for so long and simply can't anymore?

So, say you're a runner. And you run everyday, and then you run some more. You've run a hundred marathons in your life. But no matter how good of a runner (read: faker) you are, eventually, you won't be able to run anymore. You'll have to simply stop and sit down.

Once I make sure everything's okay in my brain (because I do have that whole headbanging thing at times...), maybe I should just take a rest and give myself more leeway. My voice is not a gift, my voice is not who I am, my voice is not even special... it's my words that are all of those things, and you will have my words whether I speak them or not.

So hey people (who aren't even reading this...)? BACK OFF, okay?

Maybe if you do, the words will come back, you know? And maybe they won't. But you, don't you worry about that... let ME worry about that. You just enjoy me, if you can, in whatever state I'm currently in, and that is all I need.

Thursday, May 19, 2011

Little clues

I was thinking... when you first walk into my apartment, you'll probably notice the Disney artwork on the walls, the stuffed critters, and the dolls. So I guess you might think a child lives here. But if you look a little closer, you might see more.




The weighted blanket (Hi, Els! Somekitty hissed at Laura today.)





The noise-cancelling headphones, always within reach just in case


The behavior chart in the bathroom (for brushing teeth at night... I know, I know, but I hate it)






The behavior chart in the living room (for another necessary-but-hated task)






Aaaand the behavior chart in the kitchen (I REALLY want that flower hat!)





The "Mom folder," for things I collect that need to go to Mom




The white boards




The ribbon on my backpack, which goes everywhere with me






The iPod with (cheap and awkward but decent-sounding) speaker (okay, not that weird, but YOU know what it's for! And check out the little Japanese cat that someone-who-shall-not-be-named got for me... so cute)



Wednesday, May 18, 2011

Me too

I talk, but I don't always speak.

I have a voice but sometimes no words.

I communicate, but I don't use nonverbals.

I laugh, but I'm not funny.

I hear, but I don't always listen.

I see, even if I'm not looking.

I write in words, even though I think in pictures.

I know, but I don't understand.

I look (sad/angry/happy/excited/scared), but maybe I'm just the opposite.

I can answer, but only if you ask.

Monday, May 16, 2011

But I haaaave to

I know I already posted today, but something big happened, and I have to get it out. Besides, you will understand why it's big.

I cried.

For the girl who cries daily, sometimes many times a day, why is this a big deal?

It's a big deal because I cried because I was touched. I have not been touched since I watched the movie I Am Sam when I was maybe 15. That's 8 years, but who's counting? (That'd be me).

Stuck without words, my ever-generous mother lent me nearly $200 so that I could purchase an iPod Touch and speak whenever I wanted to. I have so much to say (well, you know that by now)... but my mouth doesn't always cooperate. Sometimes I open my mouth and all I get is crying. Sometimes (often), all I get is "Hi, Els." Sometimes I get gagging. And, sometimes, I get some words. There's a lot of deep breaths and contorting my face involved, and it's very broken speech, but sometimes it'll cooperate... usually in the afternoon.

Anyway, when I got my iPod on Saturday my mom told me that (for real this time!) I'd need to pay her back, because she has dental work to pay off that ran in the thousands. I promised her that I would (and, really, I always will, but she never holds me to it. Or she accepts the ten bucks then fills up my gas tank. You get the idea. She's a mom).

Right, well, I can't work... not even sure Heather will have me watch the boys anymore with the whole no words thing... and that SSI hearing isn't even for another month, which could go either way, and even if I do get SSI, the money takes a while to come in.

So, I set out to sell my book. I expected, well, not much. And what happened? I've sold ten copies in two days. Okay, so that's $80, but that's also ten people, who will surely lend it out, who will learn about autism. That's huge.

And then, hoping and praying, I set up a GiveForward site (keep tabs here), again, not really expecting much. In fact, my mom flat out told me that people weren't going to help me and that people wouldn't like it if I didn't speak. In 24 hours, that site has raised $75! I am now just $25 away from my goal.

My mom will be paid in full within the month. But more than that, she will be proven wrong.

Wait, what?

You see, I don't believe that people are good. I believe that people are bad and that any good done is God working through them, whether they know it or not. But my mom will learn that people DO help each other when they need it... perfect strangers. Everyone from my sister, who loves me to the moon and back, to people on a message board I post on, to friends from near and far and ones I've never met at all, to one of my Food Network heros (cough ANNE BURRELL cough), to the O'D family who I've never met nor heard of, to the anonymous donors. They help. They stand behind me.

And someday, I hope and pray that I'll be able to stand behind them when they need help. I don't know that that will ever be in a financial sense, but somehow, I pray that I can help them. Help you.

And this is what brought the weird sensation in my face (that, honestly, takes me quite a while to discern if I feel happy, sad, or sneezy)... but this time, it was happy and tears. Well, I'll be.

Fifteen Percent!

I reached 15% of my goal today! Can we make it 25% by tomorrow? I think so!

The address is www.giveforward.com/ipodtouchforlydia. Every little bit, no matter how small, will help. Even if you can't donate (which believe you me, I understand), please help by spreading the word.

Thank you!

You've been warned

Maybe I'm wrong on this, but I don't feel like I all-out rant all that often. Do I? I'm not usually angry at the world... but right now I am. And this being my blog where I can say whatever I want, I'm going to write about it. Then, I'll feel better.

I've seen quite a few (5?) families who have raised the money online for their children to get iPads. Now that I have my iPod (on Mom's lent money and owe her it back), I have studied their methods and tried to emulate them. I can't raise a penny. A dime. NOTHING. And the only thing I can think is that whole thing where people think of kids as cute, little, hope for the future... and adults as nothing. We're nothing. All I'm asking for is a dollar here, a dollar there, and it will add up.

Then there's my therapist. Here's a good example of what she does. I had an appointment almost three weeks ago. Leaving her office, I made an appointment for three weeks from then (this Saturday). Later that day, I realized that this was indeed far too long and texted to ask if I could come in in about 10 days. "Of course." Okay, when is good? No answer. For almost 2 weeks. I texted her every few days, "When can I come in?" Nothing. Then, when she did answer, "Sorry, all filled." Well, yeah, duh, after that long! She NEVER answers the phone or returns calls and ignores emails, so texting is the best option. Oh, and she says that it's "impossible" that I keep going backwards and have lost my words.

I'm looking for a new (ASD specialist) therapist.

I know, I know I said that GFCF did nothing for me.... well, I've been back on gluten and casein for 10 months, and my GI system is a downright mess. Not to mention, I itch to the point that I cry. So, back to GFCF I go. I now do not eat dairy, gluten, meat, fruit, or veg. Interesting, it shall be.

OH, and yesterday, Mom told me that I needed to leave before my stepdad came back into the house because "it would be hard to explain" and "he wouldn't get it." No comment.

Anyway, excuse my rant. I'm frustrated and tired and weary.

Okay. On the road to feeling better...

Sunday, May 15, 2011

Sounds like a blog post

There is ever so much on my mind. A brain isn't a very big thing, you know, and it's awfully hard for it to carry all of this around. But, some things take precedence, so I will try to corral the "noise" in my head (for clarification, no, I do not think in words at all) and give you something cohesive.

I watched videos of myself at 36 months, at Christmas, last night. (Want to see them? I'm a cute kid. They are here). And I wonder what you see. I see flashes of ASD... to be specific, lots of totally ignoring people, spinning in circles for twenty minutes, no eye contact- though I did look at the camera twice and captured that, near-meltdowns and screaming, typical refusal to eat, and overall just extreme passivity such as my sister continually ripping things from my little paws and me just doing... nothing. So yes, it's there.

But you know... I'm not that kid anymore. I truly believe at this point that my life has been one ongoing regression. In oh, 2004?, I went on a plane to the JFK airport, found my luggage, found a cab, and went to my sister's apartment... ALONE. Now, my mom won't even let me take the bus to visit Sister lest I meltdown or, well, need to talk.

And that brings me to my next thought, which is that I still have no words. I've been told it's food allergies, or yeast, or a neurological problem... I have no idea. Honestly, I think it's just autism being autism.

But it's been extremely interesting to see how people treat a nonverbal person with ASD. Or more accurately, how they don't treat her. They ignore me. They get short with me. In reference to helping the lead pastor's wife with the kids at church last night, my mom told me, "You can't be useful if you don't talk." I feel like she was accusing me of being subhuman, somehow. So, let me say, and let you hear... nonverbal does not mean nonhuman!

And again, in case you missed it.

NONVERBAL DOES NOT MEAN NONHUMAN. I am not less than. I am not broken. I am perfectly, beautifully whole and complete.

Lest you wonder what happened with the kids, it was fine. Totally fine.

So as I was discussing some of this with Leigh via text and mentioned that I've been regressing for, well, forever... she said, but what about in terms of quality of life? Regression or progression?

No question. Progression.

If you want the real, honest-to-goodness truth, I am in no huge hurry for these words to come back. I am comfortable. Happy. As Michelle would say, I am Who I Really Am. As I would say, I am who God created me to be. I don't care how you say it, the idea remains.

Friday, May 13, 2011

A whole new world

Let me set one thing straight: There is such a thing as regression in adults with ASD. I don't care what the professionals say. There is. I have experienced it, and so have many other adults.

The fact is that I am currently experiencing it. I went to bed without words last night, as I frequently do... only today, when I woke up, they weren't back. My BSS typed with me. My CI did what she could so that I only had to shake and not and point (pointing has always been and remains unnatural for me).

The back-burner issue of needing AAC is once again very front-burner. It's urgent. Unless I am at home on my computer, I have no means of communication. My mom gets 5 texts a day, so I can have 5 exchanges with her, and that is all. Some of my staff doesn't text. When we go out, I have no means to communicate.

Please consider purchasing a copy of my book. If I can sell 19 copies, I can purchase a refurbished iPod touch and will have the communication I so badly need. I will even have voice output, which my computer does not have.

Consider buying a copy to give to a child's teacher, BCBA, aide, aunts, uncles, doctor, dentist. If just 19 people purchase a copy, I will be good to go. If there is ANYTHING I can do to thank you (answer a question, help with a behavior issue, offer my perspective, color you a picture, send you a poem on an autism-related topic of your choice, anything!) please just shoot me an email and my brain is yours for the picking.

Book link is here.

Wednesday, May 11, 2011

I'm in a poetry mood

On perspective

Beneath the sun,
Beneath the skies,
Beneath a tree,
A stone there lies.

Dark and drity,
From dusk till dawn,
There in the grass,
Upon the lawn.

Many years
Will come to pass,
Before anyone sees
The stone in the grass.

One sunny day
A human comes
It matters not who she is,
Nor what she's done.

But she steps on the stone.
And open it cracks.
Kicked to the side,
Just one half.

Now nudged into the sun,
The lonely brown stone
With brilliance casts light,
Colors,
Brilliance.
The world now aglow.

One inch to the left,
Or one to the right,
The sun would have missed,
The stone never shone bright.


In case the meaning is unclear here (I'm not sure; it's perfectly clear to me!), the stone is the child with autism. On the outside, all you see is difficult behaviors, imperfect communication, and puzzling repetitive speech and behaviors. But if you find out how to work with that child just so, how to teach him in a way that truly reaches him... well, you may stumble upon brilliance.

Tuesday, May 10, 2011

Why the dichotomy?

Why the dichotomy?

I am often
Only who I'm not,
But you don't care
So long as I have words for you.

You can't understand
(Through no fault of your own?)
That who I am
Is not the me you see.

Do you want to work on that?
They ask.
No, I don't;
I want to be free.

But in this world
The only freedom
Is to be
Everything you aren't.

You, too.

Monday, May 9, 2011

On empathy

Is it in the DSM? I don't think so, but don't quote me on that. It's a commonly accepted belief that people on the spectrum do not have much empathy (the ability to feel what another person is feeling... sympathy, on the other hand, is feeling sorry for a person).

According to Mom, when I was a young teenager she caught a few isolated glimpses of empathy from me... but that was 10 years ago, and she hasn't seen any in a long time.

And to be honest, I wasn't sure I felt any, either. I mean, I kind of function "all about me." I guess that sounds selfish, and maybe it is, but... well, that's how I am despite putting forth great effort to feel for people. I can mechanically ask if you're feeling better after being sick, or I can ask my one staff if her back is hurting from walking too much, but really, it's not so much because I care as because it's what I'm supposed to do.

I asked Mom in the car how old I was when I first asked "how are you?" and she said, "You still don't." Well, yes and no. I certainly ask Leigh what's up (because I want to know what she's doing) and I ask Chloe how she is, but beyond that, I think Mom's probably right. Mom pointed out that I want to socialize, but when someone tries to start a conversation by asking me how I am, I say "fine" and walk away rather than reciprocate in any way. But then... chances are that I don't care how they are and don't really want to talk to them, unless it's one of my "inner circle" people.

Anyway, along these lines, feeling frustrated for myself for not really feeling any empathy, it was time to get Elsie Bo her medicine. I almost (and sometimes do) cry every time I have to give it to her because she hates it so much. And I can feel what it's like to be her and how awful it is. I am deeply empathic for my cat. Also, I feel very deeply for the cats in the shelter, stuck in their cages.

Not sure how to extend this to feeling for people... but I guess cats are a step in the right direction.

Saturday, May 7, 2011

Defies expectation? You tell me

I don't know how to write this post. In fact, I'm downright scared to write it, knowing what may happen because of it. You might never want to hear from me again.

I can understand why they say what they do. They say, "Oh, no, you don't need a cure because you're so high functioning!" "You can't really have those kinds of meltdowns!" "You're so articulate and self-aware!"

And when I tell them, "No, I'm really not." "Yes, I really do." "Only when I'm sitting at my computer," they don't believe me.

I know you see the words and hear intelligence and assume the corresponding behavioral difficulties must be mild. Not really autistic, right? Super-high-functioning-Asperger's, maybe, right? And, truth be told, if you catch me on the right day and if I'm faking it hard enough, you might see that too.

But that's all lies, all fake, all pretend. It's limited. It ends. Then I come home (I'm super lucky if I'm home before I truly fall into the autism... I seem to be losing my ability to "fake it" for as long as I need to be out anymore), and reality hits.

Tonight, after coming home from a fairly slow-paced, relaxing day with lots of breaks, once again someone accused me (wrong word?) of being sooo high functioning.

And, people, I've had it. I turned on the webcam and went back to chatting with Chloe.


I hope, in posting this, that you'll learn a few things.
1. I don't lie.
2. You'll see that awesome gifts and challenges can coexist in one mind and body.
3. Watch your presumptions. You never know what's inside (in the case of "real life") or outside (in the case of the internet).



video


Surprised? I hope not, because this is what I've been telling you is there all along, right? For the record, even my therapist would be surprised by this, because I don't let her see it either... and yes, I sent her the video, because she needs to see it.

Thursday, May 5, 2011

Think Outside the Box!

I am a diagnostic challenge, to say the least.

Currently, I carry an Asperger's diagnosis from my neuropsych (who is probably the most knowledgeable but hardly knows me); one of autistic disorder from my psychologist (who is probably the most well-read and knows me best); and, one of the all-encompassing-yet-generic "ASD" or "PDD" from various other tests I've had done.

And the ultimate diagnostician? The one who really knows me? That'd be my mom, and she says that she can see both, or maybe either, that it depends on the day.

And that's just the autism! Forget about the anxiety disorders, the likely personality disorder, the mood disorder, the eating disorder... yeah, lots of -NOS flying around these parts.

But I'm excited for two reasons. Well, one reason, two consequences.

The DSM-V is well underway. That's the reason.

The first consequence of that reason is that a new eating disorder will be added that fits me to a T: avoidant/restrictive food intake disorder. Basically, I cannot stand the texture of and thus refuse to eat entire food groups worth of food, such as fruits and all vegetables. I was never much for meat and recently went vegetarian. Oh, but I don't eat seafood either. Yes, I get enough protein; yes, I take a vitamin; yes, I find ways to sneak in the healthy stuff (such as V8 Fusion and peanut-butter-banana-protein-shake-enhanced-sugar-free-low-fat-ice-cream). Still, I'm quite limited and generally can't go out to eat unless it's for breakfast (eggs and a pancake, please) and basically can't do any sort of dinner party on any terms. So, I take consolation in that there is at least a descriptor for someone like me... other than "weirdo."

Secondly, part of the diagnostic confusion that is me will be reduced due to the elimination of Asperger's in the new DSM. Look here for the new criteria. I hear that a lot of people will lose their diagnoses under these criteria, and that worries me. For me, well, I had a hunch and confirmed with Mom... if you look at the severity criteria, I'm not mild but I'm not moderate. Again, it depends on the day, and yet again, I see diagnostic wars going on with my team. There are days, even weeks, where by no stretch of the imagination would you call me mild anything... then there are bits of time where I'm like, "What autism?"

(For the record. when asked if the autism is ever invisible, Leigh says, "Yeah, when you're trying to hide it on a good day." Fair enough).

Part of me wonders when the criteria are going to start to reflect real people living real lives, you know? Oh well. We're partway there.

Wednesday, May 4, 2011

Talk of a cure

I'm not so eloquent tonight (by the way, I just had this all typed out, and my twerp of a computer deleted it, not to be found with control + z. If it does it again, I'm giving up.). I had Star (MH case manager) for an hour this afternoon. Then, I drove for 45 minutes, including on the highway, down to the Pitt study. Did computer work which boggled my brains. Then sat through a long, boring group, which I mostly spent spinning in my chair. Then drove back home in traffic. So, that, my friends, is how you get "done."

But something's bothering me. I have a secret. I thought maybe you'd want to know.

In my online world (which, I hate to say, is far richer than my "real" world), I am once again faced with a dichotomy in the autism community.

Camp A, mostly parents of so-called "low functioning" children, is all about curing autism.

Camp B, mostly the "Aspies," as I call them, is all about neurodiversity. Some even claim that Asperger's is the next step in human evolution... yeah; no comment there.

I've long preached to each his own, but I have a confession to make: I kind of bristle when talk of a cure comes up.

First of all, I'm not as so-called (I refuse to use such terms without a qualifier of some kind) "high functioning" as a lot of the "don't touch me with your cure" people are who are out there. I have been lurking and posting around Wrongplanet again, and I hate to say it, but there is just no comparison between the lives most of those people describe and the one that I lead.

I mean, I lose my words with almost daily frequency. I rock, even in public. I bang my head, I bite my hands, I have ugly meltdowns. If in a spinny chair, I spin and spin and spin. I stim verbally with my repeated phrases, though oddly enough that is confined to my apartment. At this point, I can't go just about anywhere without my mom or staff. Not even to stop for gas.

And yet, I repeat: Cure ignorance, not autism.

By saying that autism needs to be cured, you are telling me that a very, very fundamental part of who I am needs to be eradicated. And what would be left? You could not cure the autism and expect to have anything left. Kill autism, kill me.

That said, I know I need a lot of help, and I know that that translates into that I cost a lot of money, made even worse because I know that I'm not working... and, well, I struggle with all of that. And that is why I seek treatment, therapy, ABA, community inclusion, all of that good stuff. So that maybe, someday, I will be able to work.

So, yes, by all means, supplement, treat, build, ameliorate... but eradicate? To what end, I ask?

Far be it from me, or from anyone, to tell any parent that his or her child should not be cured. That's not up to me, and I will not tell anyone else what I think they should do. I don't like it one bit when others try to push their beliefs on me, so I'm not about to do it to anyone else.

But me? No thanks. Cure ignorance, not autism.