Wednesday, December 21, 2011

When Autism Gets in the Way

I shake my head when I think of the irony. Here I am, ecstatic about being able to communicate with Lilli on a deeper level through her ipad! But I am frustrated by her autism getting in the way. She can type. She can spell a lot of words now. It is so amazing. But is she sitting down to type and spill her guts to me and tell me everything she ever wanted to say?


We have to make her.

This morning I tapped on Proloquo2go, her communication app, to ask her something. She got mad and clicked out of it, and quickly opened Youtube.

I clicked out of Youtube and said, "Hold on Lilli, I want to talk to you about something. You can watch Sesame Street in a minute if you answer me first."

She got mad and jerked her hand out of my hand and turned her body away from me.

When I persisted, she relented, and typed "Yes" in response to my first question. Then before I could finish my next question, her little hand flew over to the button to click out of Proloquo2go and get back onto Youtube again.

I just am having a little trouble understanding why she wouldn't want to just sit down and type all the time now. I wish she would! I have so many, many things I want to ask her. It feels like we are getting to know her in a whole new way.

But it has to come in small spurts. She has to be in the right mood, with few distractions and interruptions. She has to be motivated to tell us something. If it has to do with food, she will type. If I ask her if she wants to watch a movie, she will type. If she is really mad about something, she will type.

Many times I have to sit with her in my lap and hug her tight while I ask her something. She struggles to get away because she wants to do her own thing. She wants to play with a toy or watch a movie. She does not want to sit down and have a conversation with her mother about what makes her tick. She would much rather watch Elmo on Youtube than tell me what she likes about Christmas.

There are rare moments when I have caught her at just the right time. The other night it was close to bedtime and quiet. I sat with her and asked her a few questions. One thing I asked her was what makes her feel scared. She answered "hospital." She had the spelling close enough for me to guess. I spelled it correctly to show her and asked her if that was what she meant to type. She typed "yes."

That made my heart hurt. I guess I was hoping she would not remember all of those scary trips to the ER. But obviously, she does.

I did not expect that answer. I really had no idea what she would tell me. I thought she might answer that she was afraid of the dark, or of loud noises, or maybe falling. When she told me she is scared of the hospital, I again had a feeling of awe. It is just such a miracle that she can tell me something she could never tell me before.

Think of all of the people in the world who cannot speak. Think of all of the other people who have treated them as if they were unintelligent or clueless all of their lives. Body language does not always tell the truth about someone. I believe it is best to treat all people as if they understand what is going on. Talk to them as if they could answer. Explain things to them as you would anyone else. Just because someone cannot speak does not mean they cannot think or understand. Why do we assume that speech is always equal to intelligence? In the case of autism, there is just no way to tell for sure. Autism is a mystery. It takes things that seem simple and turns them into great challenges.

A miraculous door has been opened for us through Proloquo2go on the ipad. But we have to make Lilli walk through it.

I believe Lilli wants to communicate with us, wants to tell us who she is and what she thinks.

But her autism gets in the way.


  1. It sounds like Lilli is acting like any kid- preferring Elmo to a chat with mom. It is so awesome that you are now able to communicate with her. I am sure as things move along she will get more "chatty" but the pull of Elmo on YouTube is strong :) Jack will do anything to watch "a little movie" on the "compooter." Glad you are all spending some time together.

  2. My thoughts exactly as I was reading this. There is likely not ONE seven, almost 8 year old, who would willing sit down and talk about themselves with their parents, especially if there is an alternative as groovy as Elmo!

  3. I had a similar thought as I was reading. There aren't many 7, almost 8 year olds who would willing sit down to talk about themselves with their parents, especially if there was an alternative, such as a favorite TV show or video! Age appropriate behavior, Mom!