One of Connor’s greatest joys in life is watching videos. Lately he has literally been waking up and immediately requesting a specific movie (over the holiday weekend that movie was Ponyo). Connor takes joy in picking out the videos, lining up all the video cases or discs so he could clearly see all of his options.
The majority of his choices consist of various Pixar movies, but we throw in some Disney and DreamWorks Animation for good measure.
This is what Connor did this morning when he got up. You can see from the picture that he constructed a very clear layout in which he could view everything. The fact that he lined these videos up in this way is just one example of his autism. For some reason, children with ASD enjoy lining things up or “ordering” things. Connor does this often with books or videos or his toys. At other times he is happy to leave things in chaos. There doesn’t seem to be any rhyme or reason to it.
However, Connor’s autism stands out most sharply when videos or movies are involved. One of his biggest developmental stumbling blocks is that his speech has been slow to develop.
Initially Connor seemed to be on track with other kids his age. His first word was “Hi” just before he turned one. He started collecting more words over the following year, but by age two he’d stagnated at about 20 words. Connor also seemed confused over how to communicate with me. He often flew into rages and tantrums because he was so frustrated that I didn’t know what he wanted or needed. It was like some horrific game of 20 questions.
Once we got into therapy, though, things began to turn around….slowly.
Connor began to acquire more words and eventually understood how to communicate his needs. Finally by January of this year we had mastered small phrases. By the time he turned 3 Connor was using phrases and short sentences, even occasionally using reflective pronouns. He’d say “I jump!” or “I dance”. The first time he said that I wanted to cry. I swept him up in a big hug and covered his face with kisses. Connor probably thought I was insane but he seemed happy enough that he continued dancing when I put him down.
The therapists and I continued to work with him on stating his needs or wants in sentence form. We encourage him to say things like “I want ________ please” or heck, I’m happy with “I want _________”.
The one thing that has stuck with Connor in all of this therapy is “please” and “thank you”, although people are so delighted by how polite he is that he often gets away with using only phrases ending in “please” rather than being forced to say an entire sentence.
Throughout all of this Connor has been engaging in “video talk”, otherwise known as echolalia (which means to echo back). He watches movies or YouTube videos over and over until he’s memorized certain phrases. He would repeat phrases over and over to himself, as if replaying a piece of the movie on his own. Initially I wanted to discourage this behavior, thinking that this type of speech would only slow his development down.
But then something interesting happened.
In the movie Up (one of Connor’s favorites) the character Russel asks the giant bird, whom he has named Kevin, if he is ok after their floating house bumped into a tree (I know this sounds bizarre but it makes sense if you see the movie, which I recommend you do). Russel says “Are you ok, Kevin?”
This simple question became one of Connor’s favorite phrases to repeat. As with most of his echolalia, I’d gotten used to ignoring it. At least I did until Connor asked me “You ok, Mom?”
Connor looked at me blank faced and repeated the question, “You ok, Mom?”
“Yes, baby, I’m good. Thanks. Are you ok?”
He didn’t answer but Connor seemed pleased with this response. He smiled and then asked each of the dogs if they were ok. They didn’t respond of course but that didn’t seem to bother Connor since he doesn’t place a high priority on language.
Like many articles I’d read about echolalia suggested, Connor was using the memorized phrases to create meaningful language.
It’s as if he is a little anthropologist studying our society and culture through vidoes, trying to make sense of our complicated language. It’s bizarre sometimes but he’s learned a lot about feelings from watching videos of babies on YouTube. He’ll see a baby cry and say “oooooh poor baby” or when a child laughs at a piece of paper ripping Connor laughs as well. He’ll usually look to me to see if this is the appropriate response to what is happening. If it is correct I’ll mimic him or if it isn’t I’ll display the appropriate emotion.
We seem to be making progress.
One day we’ll get to a point when Connor won’t use video talk to communicate or learn language, but right now it seems to be an invaluable tool. Think of those stories you’ve heard of immigrants learning English by watching soap operas. Some of their initial speech may contain words or phrases not ordinarily used in everyday language, but that fades away after a time.
For Connor he is learning language in exactly the same way. He needs a means of communicating. He has a hard time learning language from people around him. The visual nature of movies and videos allows him to internalize the language and slowly adapt it to his life.
It must be a frustrating and arduous process for Connor to learn this way.
There are things I can do to help.
1) Be patient.
Speaking is incredibly frustrating for Connor. The best thing I can do is to wait for him to express his language without rushing or prompting or losing my patience. Eventually he’ll say it. I might have to ask him five times and wait a full minute before he responds, but he will eventually respond.
2) Use his echolalia to my advantage.
If I ask him if he wants to go to the park and he responds “to the park” I know that he means yes and I know that he has all the appropriate words. Instead of just accepting that as the answer, I prompt him to respond appropriately: “Say park please” or “Say I want park” or even “Say yes please”. These instructions have been getting a lot of traction lately and Connor is able to answer questions more readily by having these memorized phrases available. We’re finally getting a lot of “Yes please” and “No thank you”! Also I can teach him new words everyday knowing that he’ll repeat me!
3) Remind him to use his words.
When your child is crying and upset it’s very easy to comfort him and remove whatever the problem is. For Connor if he doesn’t want to do something his first reaction is screaming and/or crying. This is not acceptable in the long-term. It takes every ounce of my will power not to hug and kiss his tears away. I force myself instead to stare at him placidly and remind him “use your words please”. If that doesn’t do it, I know that he wants to say no so I prompt him saying, “Connor, say no thank you.” This usually gets an immediate response. It offers him a way out. “NO thank you!” he’ll shout, which is oh so pleasant, but at least it’s something. Thankfully this message has been getting through to him so this weekend when he was extremely distressed about having to wear swim trunks to go swimming he repeated “No swimming, no thank you. No swimming, no thank you” until we got out of the water. Sigh. At least he’s communicating!
4) Don’t accept silence as an answer.
Seriously. I believe that echolalia is better than silence. It’s not a perfect solution, but it’s better than nothing. I don’t want Connor to think it’s ok to ignore the speaker. It’s not. He has to learn to communicate in order to thrive in his world. I can’t just let him be silent.
To be sure this will be a long, exhausting process. But Connor has improved so much in all other areas over the last year that I have the utmost faith that he’ll improve in communication also. Until then, I can take the video talk. I’ll just ask him “Are you ok, Connor?” until I get an answer.