Tuesday, September 8, 2009


Even when I can't speak, I still have so much to say.

There are the little words. I would like to walk to Dee's and see her dogs today. Are you coming home early from work? Hi, my name is Lydia and I am doing a walk through Autism Speaks; would your store like to sponsor me? I don't want green beans tonight. Little words, but they're still important. Where is my personality without those words, my wants, my likes, my dislikes? I need those words.

Then there are the big, exploding words. I hate autism for taking so much from me. Hate it. I'm extremely frustrated with my work situation. It's taking everything out of me, and I can't keep doing it. I was just in the hospital in June because my anxiety was so out of control; do you realize I feel nearly that bad again, just because of 8-hour work shifts? Why isn't anyone really listening to me? I'm desperately worried about my health insurance situation. Is this all because of autism? I repeat... right now, I hate autism.

There are words that I don't quite know how to get out. I feel... is this frustrated, again? I'm not positive, but it might be. Why am I frustrated? Well then, I'm certainly confused. I feel the scary, explosive feeling that I haven't felt in months. I don't know where it's coming from. I don't know how to stop it. I don't even know how to get it out.

The words won't come out with my voice. I can get some out... okay, I'm fine, ready?, stop it! But that's not enough. You wonder why I don't tell you when things are wrong... well, where are the words? Give me the words, and I'll tell you! For nine days now, I haven't had the words I've so badly needed. When will they come back? I need them. I'm afraid my anxiety will get too bad if I don't find them again. Aside from a couple of short Facebook conversations with Leigh, I haven't interacted with anyone since last weekend. I know that I have autism; according to one doctor I saw, I'm not supposed to care that there are other people in the world. I do care, and I want to talk to them. I want to talk to them so that I don't feel so trapped, so unable to communicate. I may not be able to verbalize, but I still have so much to say.


  1. I am so worried for you, my poor Lydia.

    I can only think that maybe writing notes rather relying on talking may be your best way out now, at least for day to day things like what to eat.

    Do you need to see your doctor? Get some help before you get hospitalised again?

    I'm keeping you in my thoughts.

  2. Can you show the people in your life this diary entry? Then I bet they would understand a bit better as it is very well written. Can you write what you feel instead of trying to speak it? Sometimes it is easier that way and you seem to still be able to write when you can't be verbal so that is a good thing for you.

  3. Lydia you a not alone. Four hours seems to be the magic number for working or being out of the house, so many people I speak to have the same time span.

    I'm so proud of you being able to write this post, even when you feel so despaerate, to share your thoughts is a valuable gift. You may need to take this a step further as Kate suggested and show it to people, including your boss, to make people more aware of what's going on.

    I'm certain your words will return, and all the time you can type, they're not really so far away.

    I also wanted to let you know you have really inspired me and given me back the drive to help my Bear find her words more often. I've got my determination back and also my voice to fight for her when she can't.

    Hang in there Lydia, at the end of the day, the store is not the only option and if people know how you're doing they can help.

  4. Amanda, so many people with autism, or so many people without it, about the four hours? I'm just curious.

  5. People with autism and people with aspergers.

    I had a long day in Glasgow yesterday and on the way home on the train Morag and I were trying to finish the work for the day. I was so tired I couldn't think of any words at all. I fully understand why you get so scared

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