– Johann Wolfgang von Goethe
This is not only about autism. This is about any child who is in an autism or multiple disabilities classroom. It is about any child who is in an inclusive classroom and may or may not actually be included. Mostly it is about any child who has Complex Communication Needs (CCN) and the interventions that are used to teach and modify behavior.
When children leave in the morning, I think it’s reasonable that parents have expectations about their children’s school day experience. I think it’s reasonable to expect that a child will be treated kindly and respectfully and that the information he/she learns will be useful and functional. I think that those expectations are reasonable for any child, regardless of disability.
There are three important points I need to make before I say any more. I’m switching between person -first language and identity-first language, so please know that it’s not my intention to offend if you prefer one over the other. Here’s an article about that.
Second, I am a speech-language pathologist with significant Augmentative and Alternative Communication (AAC) experience, and one of the creators of the Speak for Yourself AAC app. I have a passion for AAC and even more so for understanding and teaching the people who use it. I am not a Board Certified Behavior Analyst (BCBA), and I have not been “trained” to use Applied Behavior Analysis (ABA) or Discrete Trial Training (DTT). Here’s more information about ABA and DTT.
For anyone who is not familiar with these terms, ABA is the science devoted to the understanding and improvement of human behavior. Discrete Trial Training is an intervention that uses that science to teach and change behavior utilizing punishment and reinforcement. It is most frequently used with autistic children, but I’ve also seen it used with children who have CCN but do not have autism as a diagnosis. It is usually done one on one with an “ABA therapist” ( this can be an aide, BCBA, teacher, parent) and the student. For the purposes of this post, I’m using the term “ABA therapist” to refer to the person who is working directly with a child and uses the science of behavior analysis in his/her therapeutic approach. Here is an example of how DTT might be used to teach the color blue:
A blue, red, and yellow card are placed on the table in front of the child.
The ABA therapist says, “Touch blue.”
The child touches the red card.
The ABA therapist might say “No” or “try again” or they might say “touch blue” and move the child’s hand to the blue card.
The cards are then moved around and the ABA therapist says “Touch blue.”
Once the child gets it correct, he’s given “tokens,” praise, tickles, a high five or access to something he loves. When he gets it correct over a certain number of days with a certain number of trials, it’s expanded so that it can be generalized. For example, different color cars, crayons, or bears may be used and the child is told to “Touch blue” so he learns that blue is the color and can be applied to anything, not just that single blue card. Very detailed data is taken.
The “downfall” (in my opinion) is that sometimes a child’s progress depends on the ABA therapist’s ability to motivate the child. Blue cards are not very fun for most children. If the ABA therapist is not able to motivate the child, he could be working on that blue card for a very, very long time. Another “issue” is that teaching “verbal behavior” through a discrete trial approach is teaching a child to say something as a behavior in response to a specific demand rather than teaching communication in a flexible, naturalistic way.
This brings me to my third point. Like any field, there are excellent BCBAs who I have had the privilege to collaborate with and who have a rich understanding of the importance of communication and its correlation to a student’s behavior. We receive e-mail from BCBAs who are searching for communication systems to help their clients have a voice to replace negative behaviors. I have seen children learn skills using ABA strategies and then quickly generalize them into the “natural environment.” If you are one of the excellent, knowledgeable BCBA/ABA professionals who incorporate the evidence-based benefits of ABA and DTT into child-centered activities, you will most likely not be insulted by this post. If, when asked the question, “Would you accept this behavior toward a non-autistic child,” most people would say, “Yes!”…well then, I am not writing about you.
This is about the treatment of nonverbal children, who are treated and spoken to in ways that we would not tolerate, and we would not expect them to tolerate, if they were “typical.” It is about autistic children, who have difficulty with socialization, being isolated in cubicles or corners for the majority of their day with an adult drilling programs repeatedly. This is about reinforcing compliance over independence, and removing a child’s voice if he’s not saying what he’s supposed to say. It is about “working through a behavior” and continuing to drill programs when a crying pre-schooler does not have a way to make his voice heard. This is about refusing to accept behavior towards a child with a disability that we would find unacceptable if the child was “typical.” This is a plea to question what is being done with your child or client, and asking yourself a question that will define the expectations that others have for your child and ultimately, the expectations and value your child will place on himself/herself:
Would you accept this behavior towards a non-disabled child?
If your answer is “no,” as a parent or professional, then adjust your behavior. Require higher standards for your child, and refuse to allow anyone to minimize your child’s dignity in the name of “treatment.” There is no evidence-based treatment that compromises the integrity of an individual. Saying that a child with CCN is “simple and pleasant,” is not a compliment. It means that the child doesn’t have a way to argue. Saying that a child in a wheelchair, on a feeding tube, with no communication “loves to sit and watch the other kids run around,” means that the child doesn’t have a way to interact with his peers or classroom environment. If someone says a child “needs hand over hand prompting for everything,” it means that people are physically moving that child to do whatever they want her to do…whether she wants to or not.
Would you accept that behavior towards a non-disabled child?
If you are going to make the if-a-child-is-diabetic-you-give-them-insulin-and-you-don’t-give-it-to-a-non-diabetic-child statement, let me be clear about what I’m saying. I am saying that ABA and discrete trial training help children learn and generalize skills. I am saying that all children have a right to be able to communicate, including expressing individual preferences, arguing, and refusing an activity. I am saying that there are different approaches to every goal. If your goal is to get diabetic children to inject themselves with insulin, you explain it in a way they understand, let them try it in an orange until they’re comfortable, allow them to ask questions, and do whatever you can to make it less scary. I am saying that children with neurological issues that cause their body to work against them should be afforded the same understanding and compassion.
I’m writing about this because I feel like I have spent a lot of time “professionally disagreeing” with BCBAs about language acquisition and intervention, especially when a child is nonverbal or limited verbally.
Here is an example of a conversation with my least favorite BCBA. We are talking about a preschooler who is nonverbal and using AAC:
Her: I think we need to add the word “airplane” to his app.
Me: Okay, does he love airplanes?
Her: (confused) No.
Me: (confused) Oh, is he going on an airplane soon?
Her: (confused) Uh, no.
Me: Why do you think we need to add the word airplane?
Her: Because it’s in his programming.
Me: Is he reading about airplanes?
Her: (annoyed) No.
Me: I don’t understand why it’s in his programming. What is he supposed to be able to do once he learns the word airplane?
Her: It’s on the list of words he’s supposed to learn expressively.
Me: Who put a word on the list that has no function in his life?
Her: (sigh). I just need to be able to check it off the list to say that he’s learned it.
Me: Can we put words on the “list” that he will use and be able to practice because it will be applicable to his life? I could go a lot of days without ever saying or hearing anyone else say the word “airplane.”
Her: The programming list is the list everyone uses. We can’t just change it for him.
Me: Can we get an airplane book or toy so that it means something?
Her: If you want. I just need him to be able to say the word on the app.
Me: Can I have a copy of the list?
Her: Well, what vocabulary do you think we should add to the device…and don’t say core vocabulary!
Me: Uh…are you kidding?
The list had various nouns that could be represented easily by pictures. Core vocabulary, the words we use in 80% of our everyday communication, are not easily represented by pictures. It’s more difficult to teach core words because they can’t be concretely matched to a picture, but it also makes sense. If someone was teaching your “typical” preschooler where Greece is on a map and he didn’t know the alphabet, would you say “I just trust the experts,” and be glad that he was being taught something? Or would you question the teacher because, even though knowing the location of Greece is… well…knowledge, it’s not exactly useful to your preschooler. If something that your child or client is being taught doesn’t make sense, ask yourself,
Would you accept this behavior towards a non-disabled child?
If the answer is no, then it is not acceptable for a disabled child either.
That early BCBA conversation was followed by many other equally frustrating conversations. Here’s another example:
Her: He called the llama a dog.
Me: Well, that’s good. He’s overgeneralizing, which is great because that’s one way kids learn new words and expand their vocabulary. You know how kids call all men “Daddy” until they learn that “Daddy” is the name of their male parent. He’s calling the llama a dog because it’s a furry animal with four legs. He’s probably never heard anyone use the word llama so when he saw the llama he… By the way…How did he see a llama?
Her: It’s in his programming.
Her: Anyway, I think we need to close the word “dog” so that he can get the word llama right.
Me: What would you do if your son was calling a llama a dog?
Her: I’d say, “It’s kind of like a dog, but it’s called a llama.”
Me: Can you just say that to (the student)?
Her: No, because (the student’s) not learning language typically.
Me: That’s because it’s not being taught to him typically.
If someone is teaching language to your child and they’re calling it “programming” or “training,” be wary. If you speak to children atypically, and they receive atypical language input, they will develop atypical language. If a child is using AAC or verbally limited, it does not mean that you have to speak TO them differently. You can speak TO them as you would any child because that is part of presuming competence. Sometimes you need to modify your language complexity for children with processing difficulties or re-word figurative language for the sake of comprehension, but keep your sentences grammatically correct and natural and your tone of voice age appropriate. If you speak to children differently because they have a disability, you’re also giving them an abnormal model. When you meet these children in their later years, the effects of the “programming” is evident. Whether they’ve used AAC or not, if they’ve developed verbal speech, it is robotic and their sentences are frequently rote. They are able to say a select number of sentences exactly as they were “programmed.”
The students I’ve known who began communicating using AAC and have been able to develop verbal speech with intonation and variation of language, were students who were in a naturalistic preschool setting, where they interacted with both typical and disabled peers. They were given the opportunity to communicate what they wanted. Sometimes the answer was “no,” but they were given the benefit of being heard.
Language is a dynamic web of emotion, interaction, and experience. To learn language is to learn that words are flexible and can be rearranged in an endless combination of expression, stories, explanations, and questions. It’s the experience of using words and watching people react to what you’re saying and responding in a way that makes it meaningful. Language is not learned in cubicles, seated at little tables facing walls. Language is not learned on two dimensional notecards through drill and repetition. Language is not optional, and it is not limited to words that are easily represented by pictures. It is not measured in pluses and minuses on data sheets. Language is not restricted to a few words or sentences that someone else has chosen to allow a child to access, because “the child is so low functioning.”
Would you accept this behavior toward a non-autistic child?
Language frames the way we see people and it defines our expectations of them. If people are referred to as low functioning, less is expected of them and less opportunities to demonstrate their actual potential are provided. Nonverbal students are at the mercy of the adults in their life to give them the language they need. If they are given a small, restricted vocabulary, they will only be able to use those words or sentences. They have no way of telling the adults that there are words they want that are not included. Some students are not willing to prove themselves, and will not interact with a system that insults their ability. Imagine handing a high school student a four piece puzzle. He wouldn’t put it together to prove that he could. He might laugh and put it to the side or ignore it altogether. Allowing nonverbal children the potential to access a large, varied vocabulary gives them flexibility to find words that they have in their mind and tell you about THEIR interests. Language is power. When a child learns that, the possibilities are endless.
Sometimes when a child is having “negative behaviors” or “stimming” on her device, the decision will be made to remove the device, close the vocabulary, or ignore the child. When vocabulary or a device is removed from a child, her voice is silenced, her ability to express herself extinguished, and consequently her dignity is compromised. Verbal children ask for the same things repeatedly. They talk when they’re supposed to be listening. They get upset if the item they want is not available. Verbal children do not have to be concerned that someone will physically take their voice. If you remove a nonverbal child’s device, you’re taking advantage of her disability and forcing her to rely on the only form of communication she has…behavior.
Would you accept this behavior towards a non-disabled child?
If the answer is no, then maybe you should have a conversation with your child’s BCBA about whose behavior actually needs to be modified.
****Special thanks to Brian Young, MA., M.Ed., BCBA, co-founder of Pinnacle Counseling Center, for taking the time to “fact check” this article, and also for being one of the professionals who integrates his ABA knowledge into functional, client centered clinical applications.****