After hearing that my child has autism, the two questions I’m most frequently asked are, “Can he talk?” and “Is he high functioning?” When I answer “yes” to either question, their response is usually, “That’s good.” As if I can breathe a sigh of relief because my child is only moderately disabled.
I do not blame them their responses, in fact I welcome them. It’s uncomfortable knowing what to say when talking to someone about their special needs child. Not saying anything at all is okay and so is asking questions. Personally, I love it when someone asks me questions about Owen. It immediately breaks the ice and makes his autism not feel like the pink elephant in the room.
But to get back on topic, can he talk? Yes, Owen can talk. In fact, he can be extremely talkative. However, I have no idea what his first word was because it seemed like overnight he went from not saying anything at all to labeling everything. By label, I mean that at two and a half years of age he would go through a children’s animal encyclopedia and rattle off the names of 70+ animals. Hearing such a young child say rhinoceros and anemone was really remarkable and adorable at the same time. He would repeat word-for-word lines from cartoons that he had just watched. He will repeat something that he’s heard on TV and apply it in the proper context to a situation happening at home. I know now that this is called echolalia but at the time it looked and sounded like communication to me.
Prior to his first speech therapy appointment his therapist asked me to write a list of all the words he could say. She seemed surprised when I handed her three pages of words he could say front and back. I felt proud and relieved because at the time I thought that meant she’d be able to fix him more quickly. I didn’t notice that all of the words were nouns and none were functional. He could say hippopotamus and pterodactyl but not Mommy or I love you.
Since Owen was diagnosed when he was two years old and because he’s my first born child I had no frame of reference to help me distinguish between language and communication. I thought because he talked that he was communicating. He had been in speech therapy for over two years before I began to realize how much difficulty he had communicating. Of course, his communication problems became more apparent as he got older and was around other children his age. The first time I heard his younger cousin answer a question with a fully formed sentence. I was floored. I remember thinking, “Three year olds can do that?!”
Owen just turned five years old and has a lot of difficulty communicating properly. It’s getting better each day but the differences in communication between him and a typical five year old at this time, are vast.
He has difficulty knowing how or when to ask for things to get his basic needs met. So much of our daily interactions with him have become secondhand that I’m not even aware of the changes we’ve made in order to communicate with him. He does best when asked straightforward questions followed by two choices. “Owen, do you want a banana, Yes or No?” Or “Owen, do you want to watch the Lego Movie or Dora?” Providing him with visual cues such as holding up my left hand for option one and my right hand for option two so that he can point to his choice has been really helpful too.
He’s very literal in his understanding of language like many persons on the spectrum. For us, learning to say things directly without nuance has been interesting. Mostly its learning as we go. Instead of saying, “pull your pants down,” we say, “push your pants down.” Instead of saying “Owen, come here” we say, “Owen, walk to me.” The English language is filled with metaphors that can be terribly confusing to those on the spectrum who tend to think in more concrete terms.
Owen has a very difficult time with open ended questions and back and forth conversation. We spend a lot of time talking about his day and practicing conversation. When we leave his gym or swim class I’ll ask him what he liked best about the class. If he doesn’t respond I offer him choices. Once we’ve put together a couple of things he did in class I’ll talk about it over and over, repeating to him the things he said he did in gym class. By the time my husband comes home from work and asks him how his day was, with some prompting he is often able to put together enough words that my husband can figure out what he did that day. Being able to engage with his Daddy in that way clearly makes him happy and shows him how to connect properly with another person. This is a very important skill that I want him to have.
As a parent of a child with communication problems like Owen has, it’s very difficult to let go and allow him to attend activities, parties, and classes on his own when he doesn’t have the ability to tell me what happened or anything at all for that matter. So many children with autism get abused or mistreated and they are incapable of telling anyone about it. Those scenarios haunt me.
One of the unfortunate mistakes that I have made and still make is to underestimate Owen’s ability to understand what people are saying because of his lack of communication. That, combined with his lack of attention and faraway stare can cause me (and others) to wrongly assume that he doesn’t understand or isn’t listening to what is being said. This couldn’t be further from the truth and it’s something I need to always be aware of. He is constantly taking in the world around him even though it may not appear that way. He listens to everything, he doesn’t repeat it or make any indication that he is listening but one day, out of the blue, he’ll repeat something that I had said weeks ago. Or we’ll watch a tv show that he watched at his grandma’s house only once before and he’ll remember every upcoming scene before it appears on the screen. It’s at those times I wonder how much he’s heard when I’m talking openly to my husband about my worries and concerns and I wonder how he processes that information.
Yes, my son can talk but I have very little understanding of what he thinks about, if he’s warm or cold, if he’s sick, hungry or thirsty, if he needs to go potty, has a tummy ache, or is happy or sad. For instance, Owen showed no fear or acknowledgement of the dark at all when he was a baby. We never left a nightlight on in his room because he never needed one. Periodically, he would wake in the middle of the night screaming and thrashing about in his crib. It would take forever to calm him down and get him back to sleep. I assumed he was having nightmares. Then one night, shortly after he turned four years old, I was in his room in the middle of the night after a particularly gruesome screaming and thrashing episode. He was finally calm and lying quietly in his bed. I kissed him on his forehead and got up to leave when out of the blue he said, “Wait, it’s too dark!” I was shocked at the fact that he had communicated a need AND that he was afraid of the dark. I turned on his closet light and watched as his little body visibly relaxed into his bed. For four years I’ve been going to him and frantically trying to comfort him in the middle of the night then once he appeared calm leaving him all by himself in a dark room. Had he been scared all that time? We immediately put a nightlight in his room and it has been a source of great comfort for him ever since. I wonder what else I’m missing.
The puzzle piece is the perfect symbol for autism because of the mystery behind the diagnosis. Autism is a puzzle. Somedays the pieces fit together nicely and everything makes sense. Other days it feels like the pieces are missing. I look forward to the day when we can have a conversation with Owen. I already think he’s an amazing human being and I learn so much from him everyday. I can’t wait to hear, in his own words, what it’s like to be Owen.
Want to know more about language and communication delays in children with autism? Click on the following links for informative articles on this topic. As always, I’d love to hear from you so feel free to leave a comment below or send me a message and I’ll get back to you right away.
Social Communication and Language Characteristics Associated with High Functioning, Verbal Children and Adults with ASD