>Broken

>Excuse me for posting on the brink of a melt down, but I don’t know what else to do but write.

I’ve had type I diabetes since I was 3 years old. There came a time when I was in my mid teens that I had this huge realization: It was never going away. Ever. As in, lifelong. I did the whole rebellion thing, tried to pretend I didn’t have it, yada yada yada. Now I pay for those years with neuropathy that (surprise!) will only get worse with time.

But I digress (good at that, you know). When I first got my ASD diagnosis, I was so excited. Finally, a name! A reason! (I mean, I’d been given reasons before, but none that remotely made any sense). Now that I had a reason, I thought I could fix it. Yeah yeah, I knew all that stuff about autism being incurable, but I thought I could smart my way out of it, you know?

And that’s how I began to approach life 2 years ago, when I was diagnosed. I began to figure out every deficit I had, to mull over symptoms, and to make lists. Why? So that I could ameliorate it all. Find the loopholes. Think my way out.

After 2 years of this, I’m in so deep I can’t get out. I’m constantly trying to fix something about myself. To be honest, the research study I’m in adds greatly to this self-defeating train of thought. Examples:

Can’t read facial expressions? We’ll break them down feature-by-feature, describe each of the “big 7” using a paragraph. Good, now memorize the paragraphs and the faces. Got it? What’s this one? Close… try again. No? Okay, what’s this one? And so it goes….

People with ASD are known for being absorbed in themselves. Today we’ll learn how to give support. Think “WHAT:” W- Warmth and Empathy, H- Hopefulness, A- Acceptance, and T- Take the person’s perspective. Here are nine billion examples; come up with a supportive statement incorporating WHAT for each one.

Now we’re going to learn how to “take” someone’s “emotional temperature.” Are they “hot” or “cold?” Who is hot in your life? How do you deal with that person? Is that an effective way to deal with them? Let’s make you more effective.

You know, in these exercises you’ve been doing, we’ve noticed that you don’t really make eye contact. So now, you’re not allowed to talk unless you make eye contact, k? That’ll fix ya up real nice.

Wait- you mean you’re not using this in real life? What’s wrong with you? Come on, already!

Fix. Fix. Fix.

Fix my skin (I pick at any little imperfection to the point that I’ve ended up with a secondary infection in the form of can-be-fatal MRSA. So Mom’s making me go back to the dermatologist to put me on “something stronger” [birth control and prescription creams not having worked] so that my skin clears up so that I don’t pick. What they seemingly refuse to understand is that I’ll just find something else to pick…)

Fix my behaviors. What can we do so you don’t stim in church? What can we do so you don’t melt down? What can we do so you don’t hurt? What can we do so that you make better eye contact?

Fix my thoughts. Don’t be angry. Don’t be sad. Don’t be that word that I can’t for the life of me nail down (but I can point to it on my emotions chart, found here), which is useless right now as I’m home alone and can’t point to it for Leigh or Mom or anyone who can help.

Um, hang on, I need to melt down.

Anyway. Back to your regularly scheduled program…

Fix. Fix. Fix.

I’ll give you this: I’m the source of a lot of this wanting to fix. I mean, I get it from therapists and doctors and Mom, but probably only because I initiated it. Everyone, thus far, has been under the impression that I want to be fixed.

Will life really be any easier if I become more socially aware? I think it’ll just mean noticing it more when I don’t fit in…

Will I be any happier if I can read facial expressions or make eye contact or whatever?

I don’t like things being broken down and torn apart so that I can understand them, like with the facial expressions. I don’t like being corrected every left turn. Don’t rock your chair. Don’t tap your feet. Eyes. No, you have to listen sitting down, not standing up. And, darn it, do you really have to drink so much diet soda?

Don’t get me wrong, either; I’m all for self-improvement, but only to a point. When can a person just… be?

Maybe I should make my decisions more carefully about what to improve. So far, it’s been “fix anything that means I don’t fit in,” but that’s just not working out. A mild wide and an inch deep, it is. What if I pick one thing at a time and let the rest just be? Or what if I focus on fixing only the things that are making my life uncomfortable?

Or, here’s one for you, what if I only fix what God would have me fix? Don’t ask me how I’ll sort that out or make those decisions, but doesn’t that sound better? For example, nowhere does God’s Word say “Thou shalt make eye contact.” Anywhere. Promise. It does, however, say to trust in the Lord with all your heart, and how am I really doing at that? I’ll give you a hint: If I truly trusted God with all my heart, this melt down would never have happened.

Maybe if I take the things God would have me improve upon, pray over them, and consider just one thing at a time… inch wide, mile deep, if you will… I don’t know. I’m just thinking.

I’m not sure where this leaves the research study and all its fixing. I mean, I’m halfway through the 18 months and I sort of committed to them… and I’m not saying I think what they’re doing is entirely wrong, just maybe bad timing for me. Sigh. The greater good or… my good?

I think I’ve beat this duck as dead as it’ll get. And I didn’t answer any questions… sorry. I usually wait to write posts until things sum up nicely.

Not this time.

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>One year

>Do you remember this post about last year’s pumpkin?

On Saturday, Mom and I went to a local farm to nose around. While there, I got my big pumpkin (okay, it’s not that big; it’s a pie pumpkin, but it’s perfect for my little house). Once again, I just couldn’t resist the little pumpkins. I sought out the tiniest one (believe me, it’s small) and made my $0.81, with tax, purchase.

In case you’re wondering, thus far, I’m not quite as firmly attached to the little guy this year as I was last year, but I think in general I’m also much less anxious.

But the new pumpkin got me thinking… that was a year ago. A whole year. Think about how much has changed.

A year ago, I was working in the photo lab, feeling no sense of purpose in my life. Now, I work at the animal shelter and feel much purpose in what I do.

I was working on my book daily. Now, said book has been published and is being read around the world, though not in great quantities.

I hadn’t even found my church. I was driving the hour up to my college once a month to go to the Anglican church with Leigh. Now, I’m settling in with Mom at the new church… still trying to find a place where I belong, though.

A year ago, Leigh was just starting her senior year and was just an hour away. Now, she’s 4 hours away, working, living at home. Those first 6 months or so after graduation are pretty tough, aren’t they?

Mom hadn’t even thought about me moving out yet. Now, I’m in my own apartment with Elsie P!

We hadn’t even heard of the Autism Waiver. Now I’m about to start services.

I was between hospital visits (one was in July, the other in December). I haven’t been in the hospital in 9 months now!

So, obviously, a lot has changed in a year. 525,600 minutes. A few hundred hours of medical transcription. About 150 blog posts. A couple of hospital visits. One apartment.

Makes me wonder what next year will bring! Also makes me think that I should have saved this post for December 31st…

>Have you heard?

>Adults on the spectrum are really getting up in arms about the DSM-V.

Oh, you say you haven’t heard? They APA is proposing to do away with Asperger’s Syndrome.

Now that’s a short life for a disorder. Asperger’s, its tomb stone will read; 1994-2012…ish. Because let’s be honest, we don’t know for sure when the new DSM will actually come out.

But people sure as heck have latched onto the name. Aspies (shudder). Aspergians. Call them what you will. Personally, I refuse to call them anything but people with Asperger’s (Syndrome). I think changing the name of a disabling disorder to make it cute and fun is ridiculousness. I feel the same way about people calling diabetes “‘betes” or “the ‘betes,” as kids and counselors used to do at camp.

Now in case you’re shouting and flailing at your computer, “But you can’t speak on this subject! You don’t even have Asperger’s!” Well, if you want to be very technical, no I don’t. But my neuropsych’s office isn’t all that technical. Rather than basing a diagnosis on early development (i.e., taking into consideration early language acquisition or acquisition of self-help skills), they look at the adult’s current language skills. And now, I very much fit the bill of Asperger’s, so that’s my diagnosis at that office.

Now that I’ve got all the preliminary stuff out of the way, let me go on to explain my thinking about the recategorization of ASDs in the DSM-V.

Point 1: Asperger’s and autistic disorder have much more in common than not.

Point 2: The age at which a child develops language or given self-help skills is an extremely poor indicator of that person’s command of language or self-help skills as an adult.

Point 3: I keep hearing adults with Asperger’s who argue something like this: “But I don’t want to be lumped in with them.” Them being “low-functioning autistics.” Just as I do not believe in “Us vs. Them” in terms of autistic and not autistic, I (perhaps unsurprisingly) dislike even more the proposal of diving up the autism spectrum on an Us vs. Them basis.

Point 4: Not all people with Asperger’s are more independent, more intelligent, more social, more… you name it… than people with autistic disorder. I know many people with Asperger’s who can’t hold down a job, carry on a conversation, or graduate from high school. I know people with autistic disorder who supprt themselves financially, live completely independently, and hold a college degree.

Point 5: If someone is that bent on dividing up the spectrum, then why pick early language acquisition and self help skills? Why not:

– absence or presence of mental retardation based on standardized IQ tests?
– hyposensitivity or hypersensitivity to sensory stimuli?
– level of verbosity as an adult?
– ability to live independently or the lack thereof?
– absence of presence of early regression?

Point 6: Who honestly wants to tell anyone that they have assburgers? Suddenly, that Aspie thing isn’t sounding quite so bad…

I don’t think that we’ve hit the nail on the head with ASDs as of yet. Now, I have not thoroughly researched the topic, but I’m leaning toward the idea that there is not one autism. Rather, I’m wondering if there are not various autisms…. environmentally-induced, vaccine-induced, allergy-induced, prematurity-induced, etc.

But until we can figure all of this out scientifically, and from that I think we are many years away, we have to stick with the idea of syndromes, or a collection of symptoms, regardless of cause. Because we can’t differentiate based on cause, all we have is the results, the symptoms, by which to diagnose. People who, more or less, have the same symptoms have the same syndrome or disorder.

And I think autism spectrum disorder is the best we can do with what we have.

>Not a fun subject

>A lot of misunderstanding and myths surround autism in general, don’t you think? Genetics. Diets. Treatments. Number of hours of therapy. Intelligence and testing of such.

I think that one highly misunderstood topic is that of violence, either against self or others. Although it’s not an across-the-board thing (as in, it’s not as if every person on the spectrum is violent in some way, by any means), it’s definitely more common among those with ASDs than it is among those without.

I was always a biter. I would bite the back of my hands when I got upset or overwhelmed as young as 2 years old. I even have dreams about biting other people (I had one last night!) in anger. While biting to the point of injury has long since stopped, I still have a marked tendency to “chew” on my hands when I’m nervous.

Personally, my lashing out at other people stopped around age 10-12. I would hit, bite, and push other people when my emotions got out of control. I wish I could say that I got better control over myself and that the problem was solved, but that’s not the case. Just about the time my violence toward others ended, the self-inflicted injury picked up.

Therapists called it a lot of different things. Anxiety. Borderline personality disorder. Pre-cursor to full-blown schizophrenia. Everyone had an opinion.

But it wasn’t just when I was anxious, and it wasn’t a plea for attention by any means, and I certainly didn’t have any of the positive symptoms of schizophrenia (just the flat affect, flat tone of voice, and lack of eye contact). Basically, it was all just missing the ASD.

So I thought I’d clear things up once and for all. Why do I hurt myself and (once upon a time) other people? What’s going through my head? What can be done to stop it?

Why? Because my emotions are beyond my ability to express them. This can be anxiety, nervousness, (I’m bad at this…)… uh… anger, I guess, frustration, and I’m not sure what else. Naming emotions is not my strong suit.

What’s going through my head? White. I get white in my head. As in, no thoughts, no words, no organization… just white and twisted and crying. I’m a cryer. Also, fix it. I’ve long ago learned that I have a tendency to hurt, and so now, in an attempt to avoid that, I want to fix it quicky as possible. Fix whatever is making me upset. That’s easier said than done, because I sometimes don’t know what’s upsetting me, or other times whatever it is isn’t fixable.

What can be done to stop it? Holding the cat works wonders, but at my worst, I get afraid that I’ll hurt her, and that scares me to death. I have fairly significant OCD… namely in the form of intrusive thoughts about hurting other people, things I know I’d never do. I also think of the worst thing I could say/do in given situations. These intrusive thoughts are upsetting, but the best thing to do is to infact hold the cat and show myself that I won’t hurt her.

Help with my words helps a lot, too. Usually, if I can find a way to express whatever it is that’s bothering me, why, and how I’m feeling, then the urge to hurt significantly diminishes. But I need help to do this, sort of a step-by-step guide and answering concrete questions in order to label my emotions.

Reminders that I’m okay, that it will pass, that hurting is not an option (all Magic Words) helps, too. I usually can’t come up with these on my own, but Leigh is good at reminding me, and that goes a lot way.

So, I don’t know what else to say on the subject, but if you have any questions I’m happy to try to answer them. Either leave a comment or email me (autisticspeaks@gmail.com) and I’ll see what I can do.

>Please hold

>

Bear with me while I mentally process something I want to write about, please.

In the meantime, here is Leigh looking like a cool duck in “our” sunglasses 🙂

>Ways to make one autistic girl smile

>This post is an attempt to think of the good things in my life. My doctor doesn’t think that my depression needs to be treated, per se, but that I need to do some basic “perking up” things and reminders of the good things in life. I completely agree and am thrilled that the psychiatrist didn’t jump on increasing medication. So far my attempts are paying off very well.

So….

1. New pictures of Joe (Leigh’s cat), or your own cat. Last night I got one of Joe doing loaf of bread, and I loved it.
2. Anything new and exciting… a new smell-good candle for my house, new blue zebra-print sunglasses, new Bible study, new friends.
3. Go somewhere. Anywhere. I like to go places. Tomorrow, we’ll go to Penn’s Colony, a historical “town” and folk art show. I’m so excited.
4. Go to church.
5. Kiss the cats at work. Especially Grace, who loves to be kissed.
6. Let Sofia Loren (a b-e-a-utiful cat at work) stand on my shoulder like a parrot. I can’t hold back the giggles when she does it.
7. Take a nap!
8. Make my bed in the morning and then crawl in. I swear, it makes the weighted blanket even heavier when it’s been “made” all day.
9. A email. From anyone. About almost anything. My favorites are parents who have kids with autism who write to encourage me. They go suuuuch a long way. Also emails from Leigh with Lolcats. Those are fantastic too.
10. A freshly-memorized Bible verse to add to the list. The one that is officially “memorized” today? “As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing one another in love.” (Ephesians 4:1-2)
11. A cold diet soda never gets old!
12. Making something. Again, anything. Most recently I made a velcro itemized morning routine schedule. I left the house without make up once or twice (I wear very little; just enough to cover any red spots that Mom insists are due to rubbing the cat on my face and I say then it’s worth it… but I feel funny without my spots covered) and without testing my blood sugar a few times, so I thought it was time.
13. Phone calls about updates from the Autism Waiver. We’re getting close…
14. The specific food that I’m craving, right when I’m craving it. Cheesecake. Pizza. Mexican. All of which have happened this month! (Note: At least temporarily, I’m not gluten free, as it’s so expensive. I may well go back to it if ever I have the money, though. So far, reflux and rashes are nonexistant… this is probably because I eat just one thing with gluten in a day. I’m just not buying any GF stuff).
15. Tigger. Remember Tigger? He’s been living with me since sometime this summer. He sits on my computer desk and reminds me of Leigh, and I like him. A lot.
16. My duck. My aunt got me a duck statue from the garden store, and he, too, sits on my computer desk, right next to Tigger. The duck makes me laugh, because it’s a duck and… there I go on ducks again.
17. Elsie, especially this morning, because she was using her paw to get a chunk of my hair in her mouth and then going… YANK! Then letting it go. A bunch of times. She had food in her bowl, so all I can figure is that she wanted me to get up. Now, I might add. You just can’t get annoyed with such a cute kitty.
18. Losing a half pound a week for almost 6 months by doing absolutely nothing. It’s totally fair though, because I gained a lot of weight by doing absolutely nothing.
19. Puzzles that I can do in one sitting.
20. Really stuck now? Oh, I know…

You telling me what makes you smile. That would be great.

>Only one thing to do

>When you’re suffering from some situational depression, there’s only one thing to do.

Why, go to Kohl’s and get blue zebra print sunglasses (that just happen to fit over your regular glasses…).

But there’s a bit of a story behind these sunglasses. You
see, when Leigh got them last weekend, I absolutely fell in love. They’re not just blue, they’re almost teal. And they’re zebra print. And you never can find sunglasses that slide effortlessly over your regular glasses. But these do!

But they’re $10, and Mom told you that you can only buy food and gas for the next few weeks, because you’re even poorer than usual. So, while you mention to God that you would love said sunglasses, you pretty much give up all hope.

Until you go to Mom’s one evening and she gives you a $10 gift card to Kohl’s that came in the mail.

And even though they shouldn’t honor it until the 15th, and this was only the 13th, they say they’ll honor it anyway.

And your blue zebra-print sunglasses are only $4.80 now.

And did I mention that they’re zebra print? And blue?

And while you’re not entirely sure how she feels about matching you, the fact that they match Leigh’s makes you smile.

And now, that depression is just a little bit lighter.

Sometimes, God really pulls through in the details, eh?

(Excuse the blurry picture; all I had was my phone)