Trigger warning: This post mentions self-injury and low expectations of autistic individuals and people with complex communication needs (CCN).
Can you imagine the frustration? Words are all around you and pouring into you. They expand within you and your mind aches to speak them. They overflow, like a rushing waterfall, but with no escape. They stay there, pushing to get out, but your own body fights against them. Your brain pounds with thoughts and experiences that no one hears.
We all want to be heard. It is part of the human condition. Regardless of diagnosis, differences in neurology, disability, physical or functional challenges, we all want to communicate. If a professional tells you that your child is not interested in communicating, find a professional who will spark his interest because that is just not true. Humans want to be heard.
When children come into the world, their communication potential is limitless. We assume that their brains are taking in information. They’re listening to us. We talk to them…even though they don’t talk back.
When a child is identified as having complex communication needs (CCN) and more specifically, those identified as being on the autism spectrum, often that presumption of competence shifts to an assumption of deficit. Very small children often find themselves in a metaphorical glass cubicle.
Maybe you’re familiar with the Glass Ceiling in the business world. It refers to an unfair system or set of attitudes that prevents some people (in the business world, usually women or minorities) from reaching their full potential (high-level positions).
The Glass Cubicle for this post is referring to an unfair system or set of attitudes that prevents some people (students who have complex communication needs and students on the autism spectrum) from reaching their full potential. We, as a collective field of professionals, parents and autistic individuals who work for and with people on the autism spectrum, need to eliminate the walls.
Let’s talk about where we agree. I think most parents and professionals will agree, at least in theory, that communication is crucial. We can talk about behavior, literacy, math, social skills, self-help skills, sensory needs, basic knowledge, symbols, augmentative and alternative communication (AAC) systems, strategies and interventions for our entire lives. Some of us will. At the center of all of it, the key piece is communication. Success in any of those areas, and consequently in life, depends on that individual’s ability to communicate.
We all agree that evidence-based practice (EBP) is necessary and important. However, research can be tricky. Theoretical research has to be interpreted to determine implications in clinical practice. I also think we all believe that what we are doing is right. There are interpretations of what is “right” within clinical practice. Research can be “evidence-based,” but then, when it is translated into rationalizations for a clinical approach and actual interactions with a child, it doesn’t look exactly “right.” Sometimes, it looks very wrong.
If we agree that communication is crucial and that we’re all using EBP and doing what is in the child’s best interest, then maybe these walls are unintentionally constructed. Maybe once they’re recognized, they can be removed.
So, let’s talk about the walls.
Low Test Scores
Cognitive skills. Sigh. Discussions about the cognitive levels of students with CCN are an inaccurate waste of time. Language allows us to express our cognition. However, students who do not have access to expressive language and often have co-existing challenges such as auditory processing, global apraxia, motor issues and sensory processing difficulties are given standardized tests (which incidentally are not standardized for students with CCN) so that they can prove that they are smart enough to have access to language.
There is a correlation between language and cognition. That information can be interpreted and clinically used in one of two ways.
1. “We need to provide AAC immediately because this individual needs language to express his/her cognition!”
2. “This child’s cognition is too low for him/her to be able to understand something as complex as AAC. There’s no discrepancy between language and cognition because both test scores are in the .4 percentile. He is working to his potential.”
When that latter interpretation is used, test scores are used as a validation to deny access to AAC and to globally underestimate children’s skills. When this happens, there is a wall of low expectations that’s secured firmly as the first cubicle wall for the child.
Limited Language Access
I wrote in more detail about this in The “Beginner” AAC System Catch 22 post, but here is an excerpt and graphic from that post:
How can students show they have the ability without the words they need? If I ask you what you ate for lunch but you only have the words “cookie,” “ball,” “bathroom,” and “help” in front of you, you’ll never be able to demonstrate your skills. People around you will say you must not be intelligent enough, after all the data from your cognitive and language tests proves it. New people who meet you may not realize that the system is failing you. They’ve been told that you’re “low functioning” and they press their lips together and nod with a silent understanding to “not expect much.”
That limited language system puts up a second wall on that cubicle and also lays the foundation for the third wall…
Challenging or “Negative” Behaviors
I wrote a post earlier this month discussing behavior and here is an excerpt from that post:
We all need to be able to communicate to participate in life. People will communicate. If they don’t have a clear and consistent voice and an appropriate and effective way to use language, the only option is to use behavior. If you’re trying to teach a child social skills, he has to have a way to socialize that EVERYONE will understand to develop those skills. Communication is necessary to know if a child understands what’s been read or more importantly, his opinions about it. You get the idea.
For children with complex communication needs (CCN), who do not have reliable, expressive communication, behavior is used to communicate. A child might take your hand and pull you to something she needs. She might point, reach or look intensely at an item. Those “behaviors” are often seen as positive communication attempts. However, often if a student is having meltdowns, displaying aggression, self-injuring, eloping, throwing or grabbing, teams will “focus on behavior” before providing AAC. If you are waiting for “challenging behaviors” to decrease before introducing AAC, you’re also waiting to provide and then teach individuals an alternative way to express themselves. And with that rationalization, the third wall is solidly in place.
Here is the good news!
In a cubicle, there is one opening, a moving part…the people who work with that child. You. You can allow that child to escape. You can provide them with an opportunity to use a more complex system. You can choose to ignore or validate labels that are assigned to that child by testing. You can focus on a child’s skills and competence and expose that child to the core vocabulary that everyone else in the world is using to communicate so that he can develop real and genuine language.
Communication is modeled and children are immersed in the most complex forms of language from the moment they enter the world. They hear advanced vocabulary, complex grammatical conjugations, morphological endings, similes, metaphors, oxymorons, and personification from the day they are born, and this exposure continues for the rest of their lives. When they’re ready, as each stage of their language develops, they begin to use this language. They try it out. And sometimes they make mistakes. When they make mistakes, adults laugh and tell cute stories about it for years to come.
Here’s an example: My son is sixteen years old. When he was about 3, my husband said to him, “You have your mommy’s eyes.” My son, with confusion and panic, looked at me and then back to his dad, and shaking his head said, “No, I dot (got) mine own eyes.” We laughed and explained that his eyes look like mine. We didn’t correct his grammar and tell him to try again but this time say, “No, I HAVE MY own eyes.” We didn’t sigh, throw our hands up and say, “Well, he obviously doesn’t understand figurative language. It looks like we’re going to have to make sure everything we say to him is literal.” We accepted the communication he gave us and used it to teach him, and in doing that, we didn’t do anything special. That’s what parents do. That’s what teachers do. That’s how children learn language. That’s the way that children learn that their communication is valued.
A system has been constructed around students who have complex communication needs (CCN) that in many cases, prevents them from accessing the language to make natural language “mistakes” and in doing so, they are also prevented from accessing the natural learning opportunities that come with them.
You can deconstruct the barriers for the individual lives you touch everyday. Take down the walls. Show your AAC user(s) how to get around them. Focus on their strengths to pave their path with support and encouragement. Presume competence and give them the opportunity to generalize their communication skills. Give them a comprehensive language system that allows them to explore so that they can make and learn from their language “mistakes.” Model language like it’s your job…especially if it actually is your job. Be interested and engaged in connecting with the children (and adults) who are depending on you to see their glow because the more you focus on it, the brighter it shines.
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