Being 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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Lydia on FacebookLydia on Wordpress
I'm 23. I love Jesus, my service cat, and my mom. I have usually-high-functioning autism, though it depends on the day. I'm trying to figure out how I can live the life I've dreamed of with autism in it.


I'm 23. I love Jesus, my service cat, and my mom. I have usually-high-functioning autism, though it depends on the day. I'm trying to figure out how I can live the life I've dreamed of with autism in it.

0 thoughts on “Being Broken

  • I really appreciate your post.  thanks for taking the time to write it instead of melting down. As a parent of a low functioning son with autism, who can not speak and tell us how he feels or thinks beyond thumbs up for happy or good, thumbs down for sad or bad and using sign language for requesting basic needs and wants,  I appreciate the insight into your feelings and thoughts even though I know my son maybe not thinking any of this at all.  My understanding of high functioning autism is just what I know from friends with kids that are high functioning.  The challenges that their kids face and those my son faces seem vastly different most of the time.  I think your post painted a very distinct picture of what it is like to live with autism that I wish the general public could see.  It would be very enlightening for them as it was for me.  Thanks again.     


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