Words fly by me fast and loud. They are not formed into a sentence. They are phrases. Bits and pieces of meaning. Bits and pieces of nonsense.
Communication is more than words. It’s more than a sentence. It is a highway of meaning that connects each of us right down to our souls. Emotionally. Physically. Mentally. Communication connects us outside ourselves. My son’s communication highway is not fully constructed and already under repair.
How many times have you been on a phone call and it cuts out? You can hear only a few words. You cannot understand. You can feel the frustration both from the perspective of the speaker and of the person listening. One is trying to convey meaning the other can’t understand.
This is life with a child who has autism. Many, many of the hundreds of conversations I have with him daily are bad connections or lost calls. He uses words, but many times a day, the words have nothing to do with the meaning. Sometimes, I will get half a sentence and then he will expect me to finish it.
Other times he will repeat something he has heard on television or from a toy to convey a completely different meaning. By the inflection and urgency of his voice, I must guess what the meaning is. Sometimes, by our surroundings or by knowing his moods, I can guess what he wants. Other times, I haven’t a clue. This gets him frustrated. If I do not figure it out before he loses patience, he gets angry and that anger often leads to crying.
The problem with communication is that my son’s thoughts are disconnected from what he means. Something inside him is disconnecting his calls before they are completed. This is a nightmare I used to have. I needed to make a phone call and could not get through. Now, I must stand by as my son lives a little bit of this frustrating nightmare every day.
We may be standing right next to a toy and he wants to play with it but instead of asking to play with it, he will say something like, “Hi wheel,” and look at me. It is then up to me to, first, ask if he wants to play with the toy. If he says yes, then I demand that he ask me appropriately. Sometimes, he will just look at me as if to ask me to model the sentence for him. I will then say, “May I play with the (car) please?” and wait. He will then repeat it and I will hand him the toy. I do not know how effective this method actually is.
Another unusual communication avenue is that he wants to repeat words or phrases. He is also not satisfied with repeating these words himself. At least 50 times a day, he will demand that I or others who are present with him, repeat a word or a phrase he hears or says. “Mommy say that,” is a sentence I hear over and over again. Sometimes, I can ignore it and he will let it go. There are other times, that if I refuse or try to redirect him, he will repeat himself over and over until I’ve broken down and give in. By this time, because he’s worked himself into such a state, he needs to hear the words again to move on in his head.
When I try to read about the “whys” of this problem, I get no answers. Ironically, the information available to me, repeats itself. This standard information is available from any number of websites and comes from the National Institute of Child Health and Human Development:
Although the cause of speech and language problems in autism is unknown, many experts believe that the difficulties are caused by a variety of conditions that occur either before, during, or after birth affecting brain development. This interferes with an individual’s ability to interpret and interact with the world.
This does not help me. It will not solve our communication problem. According to the National Institute of Child Health and Human Development, this is what will help:
The best treatment begins early, during the preschool years, is individually tailored, targets both behavior and communication, and involves parents or primary caregivers. The goal of therapy should be to improve useful communication. For some, verbal communication is a realistic goal. For others, the goal may be gestured communication. Still others may have the goal of communicating by means of a symbol system such as picture boards. Treatment should include periodic in-depth evaluations provided by an individual with special training in the evaluation and treatment of speech and language disorders, such as a speech-language pathologist. Occupational and physical therapists may also work with the individual to reduce unwanted behaviors that may interfere with the development of communication skills.
In looking at things from this perspective, I am lucky. My son is receiving the best treatment available. That treatment began and is still ongoing in his preschool years. It’s individually tailored, targeting both his behavior and communication with a goal of improving useful communication, among other things. He has been improving with lots of new sentences popping up here and there. He is willing to learn. And he is loved.
With all these positives, I hope the repetitive language, known as echolalia will fade as he grows. I hope that his inappropriate use of phrases will be replaced by those which will be meaningful and appropriate. With each step toward using language to convey who he is, I will slowly know my son better. I hope that the lines will not be crossed and his “calls” will be connected and completed. Then, we will really talk. And that is something I look forward to every, single day.