Tuesday, October 27, 2009


I assume you read this blog because you want to know something about what it's like to live with autism. Are you sure you want to know?

Autism is only being able to go to work after having six panic attacks, and that's just while trying to get ready.

It's hiding in the back room, in a heap on the floor, crying, because you just had to talk to a customer and the words didn't come very well.

It's not being able to focus well enough to read anymore because of the anxiety, so you spend all day watching T.V. and trying to study. Trying, and failing.

Do you still want to know?

Autism is your parents telling you that they can't handle the "drama" of your panic attacks anymore. That you have to learn to control them.

It's when they're angry that you didn't apologize for "putting them through this again," but you didn't know you did anything to them so you didn't apologize.

It's needing to move out because your stepdad can't manage you, but not being able to work enough to be able to support yourself.

Do you still want to know?

Autism is feeling so horrible, so anxious, so trapped inside yourself that you don't want to face another day.

It's using the only coping mechanism you have... scratching your hands... to the point that you can only scratch open old scabs.

It's questioning whether you have any good to give to this world, or if all you do anymore is take away from it.

It's feeling that so strongly that you need to get to the ER... but wait, you don't have words, and when you do get it out, you're told that your fine. No one will take you.

The past week has been pretty rough. It's been building up for a while. I've been avoiding blogging because I didn't have anything to write about; I've been consumed by anxiety. Yes, I know, there's more to the world, but when you feel like you've been startled half to death every second, it's really hard to pay attention to much else. I've only called off one day of work, believe it or not. It's only because they depend on me, and if I call off, the photo lab shuts down. I don't like to do that to them. "Do what you do when you say you'll do it" is a rule. I follow rules. It's too bad "don't be anxious" can't just be a rule.

The more practical, explanatory side of what's been going on. Things have just been bad. The other night, I was in such a bad state and really needed to go to the ER. I wasn't safe. I'm not stupid, I know better, but something had taken me over, and I wasn't safe. I was scared. My parents did not want to take me. They just kep tsaying that I was fine. They wouldn't even call the psych person on call. I talked to a friend who called the police. I considered being mad, but I was so grateful that they made my mom call the hospital that I couldn't be mad. All their beds were full, so I had to wait until Tuesday (today) when my mom could call the doctor. She did, and I emailed the doctor. She bumped up my Geodon. That should help me feel less trapped, which should help a lot. The last time I felt so bad, in July, the Geodon is what got me out of it. I made a counseling appointment for Thursday. Through email, my doctor also said that my mom should promise to take me to the ER if I need to go. She said that I'm okay right now, but she thinks I'm anxious that I won't be okay again and won't be able to get to the ER. So, Mom promised. I feel safer. I hope the increase in meds works.

I've debated back and forth when it came to writing about this. But you know, this is autism. This is my life. I never said that it was all rainbows and butterflies, did I? I just write about it the way it is, cats, rainbows, ugly, and all.


  1. Hi Lydia

    Anxiety is worse than the autism itself for me. At least Asperger's has its upsides sometimes. Anxiety is just all-consuming and awful. People don't get what it's about - they're always saying the thoughts cause the feeling - you think bad thoughts, you get anxiety. But I don't see it that way, I don't know how to get people to understand that.

    I think you are a strong person who seems to know herself and her triggers very well. Be gentle with yourself.

  2. I understand and I'm sorry you are going through this. You are in my thoughts and prayers.

  3. Oh Lydia, I'm sorry that this is what you go through. Do be gentle with yourself. You have incredible strengths and you give so much more than you know. You are trying so hard and that is important but remember to accept and love yourself. You didn't choose this painful and frustrating way of experiencing life but you do choose, everyday, to love those around you even though no one truly knows what you are going through. That is a very giving love.

  4. I have severe ADHD and some Asperger aspects. I know its not exactly the same, but I've been through (and still go through) a lot of what you're talking about. Especially anxiety. Especially when not being able to work keeps you from being as independent as you want to be. DO you have a cellphone so you can call the hospital yourself if you need to? Your parents should know better than to keep you from getting any type of medical treatment. Stay strong!

  5. Lydia you are more valuable than you will ever know. The insight you give me and other parents is like the most precious thing we could ever own. Don't doubt your worth in this world. I check in on your blog every day and I worry when you don't post for a couple of days - I take it as a sign you're not doing so well - so I always send happy thoughts your way. The power of positive thought is an amazing thing, and from so far away here in Scotland that's as much help as I can be.

    If you feel strong enough to tell us about your bad times, I for one value your efforts.

    I feel for your parents too. It sounds like they're feeling trapped, not really knowing what to do for the best. Not taking you to ER could be not wanting to stress you even more only to be told to go home. (I've had that with Bear - last Christmas she was really ill and we took her to hospital 4 times and got told 4 times it was behavioural. It wasn't, I know my daughter, I made a complaint - especially about the doctor who asked us to leave as she felt threatened.)

    Autism is hard, which ever way you look at it.

    Maybe you could have a symbol on your keychain for when you're in the worst trouble, something that your people would know it was serious, like a cat with a line through it (no cat) - I figure if cats aren't doing it for you it's about as bad as it can get.

    How ever bad it gets, it is a phase, it will pass, maybe not s quickly as we would all like, but it will pass.

    Love and happy thoughts

  6. I'm so sorry it is so hard for you Lydia.


  7. PS. I am parent who has often told my son "you have to get control of yourself" during a panic attack. It is so hard to know how to be the best parent for your child when you don't know what is going on inside of them. So keep talking, to us, and to your friends and parents.