Thursday, March 17, 2011

My autism

This is so big; I don't know that I have the words inside me to get it out. To warm myself up, to get the words started, I'm going to tell you that I came home to an apartment floor just covered in kitty throw up. Elsie seems to be flaring, and that scares me. So, please, please pray for my cat.

So, onto bigger things, I guess. I read a lot online (and offline, in books). I read from so many parents, and it's interesting to see how parents look at their autistic children. There are two major camps that I see. The parent in camp A would say, "My son is NOT his autism. Somebody fix him. Somebody free him, please." They are angry at autism, they want it to go away. Parents in camp B would say, "My child is an incredible blessing of a person. People need to learn to accept him, because he has so very much to give." Some parents pull from both camps, and I'm sure some think something else entirely, but those are the two predominant viewpoints that I've experienced.

I want you to consider camp B for a moment. Have you ever noticed that, by the time children with autism turn into adults with autism, no one is saying how beautiful, hard-working, incredible, honest, pretense-less they are? The words I hear describing me are more like difficult, impossible, a behavioral challenge, "severe behaviors," frustrating, exhausting. This is from family, friends, and staff. My BSS couldn't believe that I, a (her words!) "pretty, intelligent, friendly" girl, would have horribly low self esteem. I didn't say anything, because my words failed me. But I can write it... are you kidding? How could I have anything but low self esteem? Look at the words that are used to describe me on a daily basis. When that is what you hear day in and day out, what do you think I'm going to see in myself?

A problem that seems to keep cropping up with people who know me, even those who know me very well, is that they want to be friends with me until I... get autistic on them. Until I misinterpret them and think they're frustrated with me when they're not. Until I melt down in public. Until I can't work, can't go anywhere alone without panicking, until I communicate something very poorly. Then, they get angry with me, and their words can be harsh, and it's very upsetting. It ends friendships... many.

My therapist pointed out that I'm a bit of a paradox in that I simultaneously do not much care what others think of me while also caring so, so deeply that they like me. And when a good friend rejects me based on "the way I am," when it's just too much for her, it makes me want to stop being myself around anyone.

I wish people could accept some of the pardoxes in me. That I am at the same time highly intelligent and have no common sense. That I can write a book but can't interpret almost any nonverbal signals. That I can think on my feet but not speak on my feet.

This is my autism.

My autism is being too honest and hurting feelings.

Having so many words but limited ability to express myself, some times more than others.

Seeing the world, and people, in black and white.

Not understanding pretense and getting upset with people who use it overtly.

Having ridiculous anxiety, especially in social situations.

Needing, needing to hear about my cat, even when you're soooo tired of telling me about her.

Having immense changes in abilities from day to day.

And therefore never knowing what to tell you to expect (but, please, don't ever tell me I'm faking it.)

Being basically unable to successfully talk on the phone. Someone always ends up angry or frustrated or confused. Usually me.

Being furiously stuck on rules, whether my own or those imposed upon me.

Melting down, regardless of where I am.

Rocking, banging, hitting, flapping...

Misinterpreting everything... with a tendency to assume that no on likes me and therefore everyone must be angry with me.

Never "learning my lesson." In other words, I do not generalize well and need to be taught and retaught even if the situation is very similar to one I've already been taught.

This is my autism. Is it hard? Yes. I know it's hard. It's hard for me too!

But, at least to one person in this world, I like to think that maybe I'm worth it, not just despite, but in part because of it all...


  1. Thanks for taking the time to write this - I'm going to share it with Bear's school if that's OK. You and she have some things in common...

    BTW, I'm going to get her a t-shirt that says "Autistic not stupid" as a reminder for people... I KEEP telling them but they JUST DON'T GET IT!! AARRGH!!

  2. This is really well written. Thank you for writing this. I'm so sorry you hear those things from those that care about you. That would feel very hypocritical to me.

  3. Thank you for expressing so very many things that I feel, too. I have featured this on my blog, thautcast.

  4. Thank you so much for writing this, I have a 7 yo daughter with ASD and love reading your perspective. You are wonderful and perfect just the way you are!

  5. I agree with what everyone said above... You are beautiful and perfect just the way you are... Thank you for sharing yourself with us...;-)

  6. Well said Lydia! It must of took a lot of courage to write this, good job!

  7. It sounds like it's not just the parents that go into camp A or camp B, but the professionals as well. And that's unfortunate, because they should know better and should take you as you are and treat you with dignity and respect.

    Especially with adults, someone providing support should always want to know what your goals are and your needs are rather than trying to tell you how you should be or what you should want.

  8. Such powerful words. Thank you for writing this post. As an autistic mom myself, and having two children on the spectrum I appreciate the courage you posses.

  9. Wow. Your words have me in tears. My four year old son has Aspergers (just diagnosed), and it's just so entirely true what you said. Thank you for your perspective and your honesty. It's beautiful, raw, and exactly what a parent like me needs to hear! Many blessing to you!!

  10. Thank you to all of YOU who will read my words. My words are nothing if not read. I am verbal, sometimes very much so (uh, if I forget to take my meds...) but I simply cannot speak like I write. The words get stuck, I forget halfway through what I'm saying, I get lost, I stutter a little... it's just not there. THESE are my words. So, again, thank you, thank you for reading them and allowing me to have a voice.

  11. thank you, lydia. i hear you.

  12. Does your faith moderate at all the feeling of "not being worth it," or do you often feel just as worthless to God? For me, it is like a game I play just to stay alive - trying to believe that I matter to God when I can't even manage to earn any value to human beings right across the room from me. It never fools me.

  13. Well expressed.

  14. thank you so much for sharing this with all of us.

  15. Its so nice to know Im not alone...
    I hate losing people Ive had time to grow to love, because they do the same thing.