Early in my career, I had the pleasure of working with Mary. She was a young lady who, due to a stroke at birth, was severely cognitively and physically disabled. She was wheelchair-bound and could walk only with physical assistance. She had no use of her left hand, and only partial use of her right hand. She was blind and nonverbal. Basically, when something was not right-now world—such as when she was hungry, needed use the bathroom, or didn’t feel well—she cried loudly and hit herself over the head with her operational hand until the problem was fixed. As her staff, I had to work through everything that could possibly be wrong to figure out what she was upset about. She spent a lot of time crying and hitting herself on her head due to our inability to communicate effectively.
After several months of watching her spend a good chunk of her day hitting herself, I got the bright idea that if she could simply communicate “yes or no,” we might be able to do better work together. I figured maybe she could tap her operational hand once for yes and twice for no. I took my idea to our behavior specialist, who patiently explained to me that teaching yes and no signals to a nonverbal individual is perhaps one of the hardest things to teach. She did like my idea to improve Mary’s communication, though.
Together, we came up with a plan. We got a four-button communication device and programmed it with a female voice to say the following things: I’m hungry, I’m thirsty, more please, and bathroom please. We figured these four requests covered the basic things Mary wanted throughout a day. To get around the blindness, we attached different textured items to each button so that Mary could feel the difference between them. I then spent almost a year using a behavior-shaping protocol to teach her how to use the device and discriminate between the buttons and make these four simple requests.
It was slow going, but eventually Mary learned how to use the device independently. If that were the end of my story, that would’ve been a pretty awesome outcome to things; however, the results of this intervention went far beyond my greatest hopes. As Mary mastered the use of the device, she stopped having tantrums and hitting herself all the time. This went from a several-times-a-day occurrence to less than once a week, if that. In fact, she started smiling much of the time. By allowing Mary to communicate those four simple phrases, we dramatically improved the quality of her life. It was from this experience that I learned the important link between communication and behavior.
An Important Link
Technically, communication is a form of behavior. More importantly for our purposes, however, is that behavior is communication. Imagine how it might feel for you if you couldn’t ask for even the simplest things. How might you behave? As disruptions and difficulties in communication is one of the hallmarks of autism spectrum issues, treating communication should be a top priority for these individuals. By improving communication, we can greatly reduce the frequency and intensity of challenging behaviors.
When confronted with your child’s difficult behaviors, it is often helpful to ask what it is your child is trying to say with his or her behavior. For example, if you see me get up, go to the kitchen, and make a sandwich, you can safely infer from my behavior that I am hungry. Figuring out what your child is communicating with his or her behavior is a big step in figuring out the function of the behavior (Step 1 in the behavior-change process).
Another thing to keep in mind is the nature of the communicative difficulty. Communication consists of two parts, expressive and receptive. Expressive communication refers to one’s ability to say things to others. This is perhaps the most common disruption that occurs. Problems in this area lead to difficulty asking for things and gaining attention. Problems can range from a complete lack of verbal ability (such as what I see in my youngest autistic child) to limited verbal ability (such as my older autistic child who has a few verbal phrases, but they are hard to understand) to nonfunctional language (such as a person who speaks clearly but simply repeats or parrots what is said to him or her). Problems in receptive language refer to one’s ability (or inability) to understand what is being said. This is more prevalent in head injury and stroke conditions.
Often, autistic children will have poor expressive language but perfectly fine receptive language. They struggle with telling others what they want, but understand much of what is being said in their presence. This can lead to behaviors related to frustration about not being able to ask for desired items or attention. I often also see behaviors related to frustration because others assume lack of language means lack of understanding. By improving communication through teaching expressive language, a child like this can ask for what he or she wants and can also demonstrate understanding. This will reduce behaviors related to getting what he or she wants, and improves how others relate to that individual. It’s a win-win situation.
How Do I Teach Communication?
There are many systems of communication out there. I will review the pros and cons of specific systems in a future article. However, here is a brief list of some ideas you can try with your child:
- Signs and gestures: Chances are if your child has communication issues, he/she is probably doing this already, but it is something that can be improved upon.
- Picture Exchange Communication System (PECS): Check out pecs.com for the formal system. In short, you can create a book of pictures that your child can learn to use to communicate.
- Writing: Some individuals can write what they want to say even if they can’t say it.
- Talking devices: These consist of special devices the child can activate to say prerecorded things.
- Tablet apps: There are a number of apps for the iPad and other tablets that act very much like the aforementioned taking devices.
What are your experiences with communication and behaviors? Please tell your stories in the comments section below.
Remember, parents … breathe. You got this!
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