Wednesday, September 29, 2010


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.


  1. Lydia, I really think I understand what you are saying in this post. I do not have the answers tho. In my own opinion, ASD is not something that can be fixed - especially when diagnosed so late as in your case and in the case of my daughter. I do know that it is entirely overwhelming to try and work on more than one thing at a time.

  2. What if... what everyone needs is not to be fixed but to be broken--broken enough to admit that they don't have all the answers and they need God: His help, His mercy... What if you were born on the one straight steep road (the one where God is the only destination). It's not an easy place to be, a semi-visible exile, a spiritual tattoo, but maybe it's the shortest distance between two points; earth and heaven.
    This study--think of it as a way of studying them while they're studying you. Yeah, ok, it feels a little like being a zoo exhibit, but it just means that they like picking at stuff too. Frankly that emotional wheel carries way more negative stuff than positive, so life must be hard for neurotypicals too (if that's how they frame it).

  3. You are not broken any more than any of us our broken, Lydia. I love this scripture reference and others like it (Col. 2:9-10): "You are complete in Christ." Some of us just have more apparent "disabilities" but we are all imperfect, yet when God looks at those who have set their hearts on Him, that's not what He sees. If only all of us were better able to understand that this physical, temporal world we're immersed in may be fact, but not truth.

  4. Hey Lydia! Things have been a little more chaotic than usual around here so it's taken me a while to get round to reading all of this post and here's what I think - and this is just me, autism mum to 2, not specifically Christian but having spiritual awareness - if it makes you unhappy, address it. If it makes life hard for you - not your mum, friends, work colleagues, just you - then work on it. If putting that into a Christian framework helps, go for it. Anything else is down to others to accept and come on, is it really so important if you need to stand up to listen or sit down? Believe me when I say the fact that you can listen is the important part.

    Have had about 12 hours sleep in the last 5 days so hope this makes sense!

  5. This might be my favorite thing you've ever written:

    "nowhere does God's Word say "Thou shalt make eye contact."

    Lydia, I do believe God loves you for all you are. I like what Amanda said about only working on things that make YOU happy and bring YOU relief.

    I'm glad you decided to write while you melted. It's the best medicine as far as I can tell.

  6. lydia, just wanted you to know that i hear your heart in this post. i don't have any answers to offer either, but something i've learned a lot about this year is that there is beauty in the brokeness (and i do see that beauty in you, in your courage and determination to learn to trust Jesus).

    there's a Puritan prayer (and a song based on it: ) that speaks to those of us who are so very broken.

    Lord, high and holy, meek and lowly, Thou hast brought me to the valley of vision, where I live in the depths but see Thee in the heights; hemmed in by mountains of sin I behold Thy glory. Let me learn by paradox that the way down is the way up, that to be low is to be high, that the broken heart is the healed heart, that the contrite spirit is the rejoicing spirit, that the repenting soul is the victorious soul, that to have nothing is to possess all, that to bear the cross is to wear the crown, that to give is to receive, that the valley is the place of vision. Lord, in the daytime stars can be seen from deepest wells, and the deeper the wells the brighter Thy stars shine; let me find Thy light in my darkness, Thy life in my death, Thy joy in my sorrow, Thy grace in my sin, Thy riches in my poverty, Thy glory in my valley.

  7. Jeneil, I love that! Thank you for sharing it.

    The beauty of brokenness is something I feel like I'll never get a hold on. Is there beauty in being a walking disaster? That, I've got down.

  8. This is exactly how I feel sometimes. D; Ugh.
    Thank you for sharing!