Wednesday, November 4, 2009

Life with a communication disorder

I say: Speaking is hard for me. Writing is easier.
I write: When I speak, it's kind of like walking around in a dark room with a flashlight. I have limited ability to see any obstacles in my way, but I get tripped up a lot and run into things that cause problems. When I write, though, it's as if someone has turned the overhead lights on, and I can clearly see the layout of the room and any potential issues.

I say: Boil it. On the stove. Not for 3 minutes, more than that.
I write: I don't know how to hard boil an egg, but I know how to soft boil one and I assume the process is similar. First, set the eggs in a pot of water. Turn the water on high and wait for it to boil. If you're soft boiling, when the water boils, set the timer for 3 minutes. When the 3 minutes is up, turn the heat off and douse the eggs in cold water until they're cool enough to touch. For hard boiled eggs, I assume you just boil them longer than 3 minutes; I just don't know how long.

I say: I like cats.
I write: I love cats because they're so calming and centering. The sound of their purrs and feel of their furr offer a sensory experience. They allow me to engage in a way that I can't with people, in a way that doesn't require words. Cats allow me to reregulating myself, every time I see one.

I say: Does it make sense?
I write: Do you better understand now what it's like to live with a communication disability? To have so much in your head and just not be able to get it out? To be so overwhelmed by the sensory world that you can't get past it to compose your words in speech? To have people treat you like you're unintelligent, because you don't speak like a very intelligent person? Will you keep this in mind then next time you're talking to someone with autism?


  1. Lydia, I'll keep this in mind when I'm trying to engage my 5 yr old when I just can't get a response from her.

  2. If I had a penny for every time I've told someone my girls are autistic not stupid I would be a very very rich woman! right there with you Lydia...

  3. Maman was trying to call me the first time about the Berlin dominoes (a display I had seen in the newspaper and was now on television).

    Then after the weather, the programme showed the dominoes as the last thing.

    I try to come when I am called but not what-for.

    Actually saw a cat as well, and patted her (her name is Sophia Loren and she has incredible green eyes). Never mind that my right shoulder is not so good.

  4. Hi Lydia,
    I'm still out here:) I love the way you wrote this and can identify with it myself as an introverted writer who doesn't say much. Who is that said, "Not being able to talk is different than having nothing to say"? A famous autie, i just can't recall.

  5. I will definitely keep this in mind, especially when speaking with my four year old son living with autism. Thanks for these great thoughts!

  6. My 6 yr old daughter does not have autism but she does have a communication disorder, verbal apraxia, as well as various sensory issues. Although she has come such a long way in developing verbal communication & overcoming her sensory issues this just hits home for us.

  7. Beautifully written and so helpful. Thank you Lydia. From a dad of a 3 year old who is doing great.

  8. Speaking has always been uncomfortable for me too, but I have always been an eloquent writer... I am a Fragile X carrier, but have never been diagnosed as autistic in any way... I am starting to wonder about myself...

  9. wonderful! i was never diagnosed as autistic but i was very shy as a child and writing was easier for me to express myself. i am outspoken now but i appreciate what you are experiencing. keep going after your dreams. nothing is impossible!

  10. I suppose writing is easier even for Aspies. I find it difficult to speak to others, even those I know.

  11. Excellent post! I must thank you for this informative read. I hope you will post again soon. nice post.