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Trisomy 21 Update“No!” “Stop it!” “I don’t know.” Arms folded; body, face turned away. Sitting on the floor, refusing to move — a situation fondly and frustratingly, referred to as “stop, flop and drop.”
Psychologists refer to this behavior as “oppositional” or maybe even “defiant,” but that often didn’t fit with the smiling child I saw in front of me, eager to please and generally compliant. From the hundreds of children and young adults I have assessed and from studies on development and cognition, I came to realize that these refusal behaviors needed to be interpreted differently in individuals with Down syndrome (DS).
They often really meant: “I don’t understand.” “I’m frustrated.” “I need help.” “Give me a minute, I’m not ready yet.” “I need to know what’s happening next.”
Effective behavior intervention requires an understanding of where the behavior is coming from, taking into account the context, people’s level of ability, their temperament, their experiences and how they learn best. Individuals with DS are just that, individuals, and thus what works for some may not work for others.
The broad areas that help explain many of the behavioral challenges facing caregivers of individuals with DS include sensory processing (discussed in the Fall 2013 issue of Trisomy 21 Update), development and cognitive processing (the focus of this article), and communication, social and emotional functioning (which will be discussed in a future segment).
As children’s brains develop, they become capable of more and more complex movement and thinking. This development occurs in predictable sequences over the first 25 years of life. Timing of development varies widely across individuals with DS, and therefore regular assessment of progress is necessary to help keep expectations reasonably challenging.
While striving to push a child to accomplish to the best of his ability, expecting behavior beyond his capability will frustrate everyone and result in refusal behavior. For example, if a child is just starting to draw lines and circles, expecting her to copy letters does not make developmental sense.
Refusal behaviors will also occur if you underestimate the child’s capabilities, and the child is bored and ready for more challenging tasks. Another common cause of refusal is when a child “can” do that skill on his best days, but the skill is still emerging, not quite solid and easily sabotaged by stress, anxiety or anger.
Like all of us, children with DS have different levels of frustration tolerance. Some will happily fill out an entire math sheet, confidently writing numbers in the blank spaces; others get to the first question they are unsure of and put their heads down, refusing to try. For children with a low frustration tolerance, tasks need to be approached carefully, starting with mastered tasks and building momentum in order for them to try more challenging tasks.
Cognitive processing refers to how we take in information, put it together with what we already know, and then think through a response. Cognitive processing in DS is often characterized by longer processing times, more difficulty flexibly switching from one thought to another, limitations in the amount of information that can be kept in mind at once, and difficulty with the organization of that information to make sense of the situation and respond appropriately.
Some of us are visual learners, more effectively taking in information through what we see; others need to read information; others need to hear it. Individuals with DS tend to process visual information better than language. That’s why we emphasize “talking in pictures” to help them process both simple information (e.g., what’s going to happen today) and more complicated problem solving (e.g., what to do when a friend ignores you). Visual supports have also been used very effectively for children with autistic spectrum disorders, and often those same visually based interventions can be used for individuals with Down syndrome.
Longer processing time requires waiting longer for a response to what you’ve said or shown. This is probably the most common situation in which to see the “automatic no” response. Often ignoring the refusal and waiting will work. “Patience is a virtue” is the needed mantra. Pressing too early may result in higher stress and more “shut down.”
We are all required to move our attention from one thing to another thousands of times a day. You are reading this article, glancing at the clock, then to the TV, then back to the article. For some, shifting from thought to thought and activity to activity comes easily. For others, including many with DS, the shift is harder. This difficulty shifting may also result in getting “stuck” on certain things and having difficulty moving on.
Transitions between activities or thoughts require preparation, effort and time. This is probably the second most common cause of the “automatic no” response. It can be eased by warnings that the transition is coming, e.g., a countdown or a transition song (who doesn’t love Barney’s clean up song?). Giving a child a heads up as to what will be happening next can also be useful, such as using a visual schedule or a social story.
We are also required to problem solve several times a day, quickly and efficiently. We take into consideration the pieces of information we deem relevant, usually from what we see and hear, keep that information in mind while we think about what we’ve experienced in the past, then consider the consequences of what to do next, and finally respond — usually in the space of a minute or less. It’s complicated.
Individuals with DS may have difficulty paying attention to all the relevant information, focusing only on one or two things. Their attention may need to be drawn to the relevant details. (Look at her face; is she smiling or frowning?) This then will influence how they relate that to their experience in order to interpret the situation.
Guiding them through the process of how to think through the situations can help them with the interpretation. (She is unhappy, you’re right. What could have happened?). They then may have difficulty choosing an appropriate way to respond and considering the consequences of their actions before they act. (What do you think you could do? Ask her if she’s OK, or if she needs help? Bring her something to eat?) Some individuals will have difficulty answering open-ended questions.
It may be more effective to give them multiple-choice answers from which to choose. Especially for these multiple-step processes, visuals to help understanding can be very useful. Figuring out where processing is breaking down takes detective work, but gaining this understanding will help problem solve in similar situations in the future. Also remember that problem-solving gets even harder if stress or anxiety is present. These differences in processing likely explain why so many individuals with DS thrive on predictable routines and structure.
Indeed, they often impose their own routines and structure on the world around them, needing to control the physical structure (e.g., doors need to be shut, tables clear), what happens next or how activities are to be done (I open the door and you walk through). We can optimize behavior and learning and minimize stress by structuring physical spaces, organizing activities and building routines. Within these comfortable environments, we can then more effectively teach flexibility and problem solving, thus averting future frustration behaviors.
* Reprinted with permission from: Down Syndrome News, newsletter of the National Down Syndrome Congress, 30 Mansell Court, Suite 108, Roswell, GA 30076,
Contributed by: Mary Pipan, MD
Categories: Trisomy 21