Jennifer Gray, MS, CCC-SLP
Do you want to better help those with Down syndrome on your caseload? Do you feel stuck when your efforts don’t work and when undesired behaviors impede learning success? You are not alone. There are many communication and learning obstacles for those with Down syndrome. But there is also a better way to ensure success.
Down syndrome, or trisomy 21, is the most common congenital syndrome in the world. While we know this, it can be disheartening to find relatively scarce information about speech clarity interventions and techniques for language use. Even more perplexing is the lack of techniques and materials designed for the way those with Down syndrome learn, considering it is classified as an intellectual disorder. Being a syndrome, trisomy 21 is a grouping of needs, disabilities, and strengths that are highly variable from one individual to the next. Medical needs, concomitant disorders, executive functioning, and social dynamics make Down syndrome a complex diagnosis to treat. This complexity is why we all struggle with successful interventions for this population and why time is of the essence.
Advocacy for the acceptance of those with DS and their abilities has drastically improved over the last ten years. Advancements in medical research and practice have given those with trisomy 21 longer and healthier lives, and parents have forged the path of acceptance and equality in institutions such as general education with neurotypical peers, vocational opportunities, and even advertising and entertainment. Their efforts have improved the visibility of those with Down syndrome in our cultures, and genuine affection for this population is strong. While this is all wonderful, it should also make us immediately worried.
When we look at the statistics for this syndrome (nearly every article starts with these numbers), the most shocking is that of life expectancy.
Life expectancy: 1959 - 9 yrs
1983 - 25 yrs
2018 - 60+ yrs
For the first time, most people with Down syndrome will outlive their parents. This means they will need to be independent and have a means of contributing to society to support themselves outside of simply being liked or accepted. As speech-language pathologists, we must embrace advocacy, but more importantly, we must promote the abilities and capabilities of those with the syndrome. The most difficult disability for those with trisomy 21, outside of medical needs, is communication. Most people with Down syndrome are very difficult to understand when they talk and have cognitive/executive functioning/learning differences that affect speech and language use. The #1 reason parents seek help outside of school is for clear speech. Not language. Not eating. Not AAC. Every parent wants their child to be understood when they talk. At first, this seems normal, but we, as a profession, have moved away from this goal to offer other means of communication because speech is hard. Speech is the most complex neurological and physical ability of human beings. Any disruption to those systems results in communication delays and disorders. We have done amazing things with sign language, picture representation techniques, and technology to speak for us, but the original problem remains. People with Down syndrome continue to use speech even in the absence of success. Speech is natural, readily available, and all around us. But because speech is so dynamic, it takes a lot of time to perfect. This is discouraging for many and often results in avoidance of speech in favor of language goals.
Successful communication and learning must involve speech. Some learning theories present language and knowledge as incomplete without speech to organize thoughts to share with others. Whether we think in words or pictures, speech is attached to both. For our purposes, speech can be classified into two main categories: intelligibility and comprehensibility. Intelligibility is the accuracy of sounds and sound combinations, while speech comprehensibility is how well a person is understood. A message may be understood if one or two articulation errors are heard. But what happens to the same message when rate, loudness, pitch, fluency, voice, and resonance are impaired? Nearly every utterance may be misunderstood.
Another area of contention for this population is the assumption that someone with an intellectual disability must have difficulties in understanding language. This cannot be farther from the truth for most people with Down syndrome. People with DS have higher receptive language skills than expressive language skills. We do not need to hammer away at teaching those with DS vocabulary and comprehension. Those are two relative strengths. What is needed most is a better way to retrieve information, improve motor planning, and develop consistent execution of speech.
This three-part series was developed as an introduction to the main areas of need for those with Down syndrome that speech-language pathologists are specifically trained to treat. In place of common age-anchored developmental approaches are three broad areas that underlie all we aim to improve yet commonly ignore. These three are Promoting preventative strategies, preparing the person and family for each next step, and the dire importance of Practice.
What can we prevent? Obviously, not trisomy 21, but many of the hallmarks of Down syndrome we subconsciously assume are inherent to trisomy 21 are not inevitable. The first course will introduce therapists to the anatomical, physiological, and medical differences experienced by a person with Down syndrome to understand how these biological factors affect communication and behavior. Some of the most common roadblocks to success result from the interaction between anatomical and physiological factors and how they shape the sensory, cognitive, and behavioral/social abilities of a person with DS. We may not be able to change anatomical differences (although some professionals are trying). Still, recent clinical research and practice have shown that many physiological systems are malleable due to advances in understanding neuroplasticity. Both the brain and the body can be changed over time through the repetition of the desired skill that promotes self-awareness.
The first course will provide more specific goals and techniques that will set the expectations for those with DS and dispel misconceptions that perpetuate myths and excuses that prevent competency. Evidence-based research will be shared to acknowledge undesired behaviors, executive functioning, short-term working memory, concurrent speech and language disorders, and assessment options. Some of the areas we can prevent include sensory disorders, respiration, and breath control for various functions, aversive oral and self-stimulating habits, reliance on non-speech verbalizations, motor planning deficits, refusal behaviors, vocal abuse, difficulty listening and answering questions, lack of self-awareness and self-correction, and absent internal motivation.
With a basic understanding of Down syndrome and our role in the quest for clear speech, self-awareness, and independence, the second course will lay out our role in preparing those with DS to learn and be understood. I have listened to parents for over a decade and learned that they know most about what their children are good at. Our educational training teaches us what those with specific disorders are not good at. Combined, we can resolve confusion and teach others how to use strengths to compensate for relative weaknesses. When efforts break down, or interventions don’t work, they can often be traced back to poor preparation. Students/clients who are not prepared often fail for a reason having nothing to do with the task but their experience with it. How can we expect behaviors a child has not been expected or taught to use? A common generic problem is how to behave in a classroom setting. Parents should be coached to prepare their child with Down syndrome for classroom learning that includes behavioral restrictions (we can’t hit the teacher when we don’t like a task). Many times, we unintentionally deprive those with Down syndrome of necessary experiences because we assume it is too complicated or overwhelming, making learning more difficult and decontextualized.
If we know what is difficult, we can plan for its prevention or prepare for its impact. For example, if we know that visual learning is a strength and auditory information is difficult to retain, we know providing visual supports will help visually and auditorily stimulate environments such as schools and stores. If utterance length (MLU) remains significantly low and the child can read out loud, reading can be used to practice saying more words when the cognitive task of retrieving the information and planning how to say it is reduced. Preparing for these scenarios tells us when and what to practice while leading us to our long-term goal of using longer utterances in unscripted and spontaneous speech.
Knowing which strengths to limit or avoid may be equally as beneficial. For example, People with Down syndrome are often credited with strengths in social skills. However, being social can also be used to avoid tasks and hide language and learning deficits. This often becomes painfully realized in school settings if acceptable social behaviors are not experienced, taught, or practiced. To make things even more complex, many negative behaviors stem from not feeling well, being in pain, or from chronic lack of sleep. If these are not identified and addressed, behavioral strategies will fail, and the child will be withheld from environments that prepare him/her for learning. One researcher calls this “learning the hard way” (https://library.down-syndrome.org/reviews/10/). Lack of progress due to negative behaviors that impede learning is often blamed on limited speech and language skills. Not only is this rarely true, but it is detrimental to progress. Behavioral phenotypes shared by those with trisomy 21 emerge in early childhood and stem from weaknesses and strengths that define the disorder, not on speech and language abilities alone. Preparation for future success must include regular conversations with caretakers and social engagement in multiple settings through frequent practice before performing in them.
Speech clarity and expressive language use (telling others what you know) will be life-long pursuits that must be maintained. Consider the practice time for speech and language use that a neurotypical child experiences from 6-12 months to adulthood. Then, think of the speech practice a person with DS gets. By the end of toddlerhood, the difference is already immense. An experiential and cognitive gap exists long before most therapists begin working with a child or adult with DS. For this reason, frequent practice in high repetition is essential. Simply enriching a child’s environment is not enough.
Children with Down syndrome must be taught how to use speech and retrieve the knowledge they have. Remember, people with Down syndrome have better receptive language skills than expressive language and struggle most with verbal auditory memory and motor planning. What the child knows is not the problem; retrieving it is. The only way retrieval of knowledge and speech clarity improve is through practice.
Consistent and deliberate practice improves speech and language abilities through engaging neuroplasticity that improves awareness and self-confidence. This is also referred to as active engagement. Those with DS must actively engage in practice and need additional time to master skills. But here is the bright side: people with Down syndrome like repetition and familiar practice. Consistent practice of achievable tasks is extremely rewarding and confidence-boosting. As therapists, we must recognize this desire for skill mastery before graduating to higher goals. We already know this from principles of motor speech that drive Childhood Apraxia of Speech interventions. Practice should not be done for its own sake but can be incorporated into pre-existing goals to help the child access prior knowledge when performing cognitive and communication tasks (think all things academic). Examples include practicing functional phrases, replicating prosodic patterns of others, incorporating voice and fluency techniques, and using pacing techniques, such as reading for speech, to improve MLU and motor memory, all while scaffolding skills for more complex tasks such as participating in conversations.
Independence and empowerment should be our end goals. Viewed as a set of practiced skills, these can be incorporated into current speech and language goals in any setting. The 3-part course will provide more detail and specific strategies to Promote/Prevent, Prepare, and Practice speech clarity for those with Down syndrome.
