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Language & Communication: The Key is Effectiveness
by Julie Bierman Gee, MS, CCC-SLP
Sam is a 14-year-old high school student who carries a dual diagnosis of Down syndrome and autistic spectrum disorder DS-ASD. At home, he shares many of his wants and needs by making different vocalizations, which his mother understands and interprets for him. At school, Sam is less successful communicating, and often is unable to get his point across. To date, Sam's speech and language services have been centered primarily on production of speech and improvement of oral motor skills, with infrequent and inconsistent attempts at using pictures. Sam is beginning to show frustration at school by acting out physically and not following directions. As he gets older, his mother is growing weary of being his interpreter. She realizes that he needs a more effective way to interact with the world around him because she cannot always be present.
Catherine is an active five-year-old girl who, like Sam, also has a dual diagnosis of DS-ASD. When she was in early intervention, her communication services focused on using total communication, a method of combining speech and sign language to encourage communication. Catherine is able to communicate her wants and needs through sign approximations. She also understands more signs than she is able to make. Using sign language has allowed Catherine to communicate effectively with people other than her family.
While Sam and Catherine both have DS-ASD, they are examples of children whose very different types of communication intervention yielded very different results. Clearly, no two children with Down syndrome and autistic spectrum disorder are exactly alike, and no two approaches to therapy will be exactly the same. All children with these diagnoses do, however, share unique speech, language and communication needs. As you meet therapists, teachers and other professionals, you may become discouraged by the things it seems your child can't do. What's important to remember, though, is that all children can learn to communicate. That communication may take different forms for different children: your child might use sign language, while his classmate uses an augmentative communication device. However, creating an intervention program that focuses on communication is sure to let you and your child see positive effects. This article will offer you information about things to consider as you begin intervention, and give you ideas about ways to begin to focus on communication with your child.
Implications for Therapy:
The good news is that myriad options exist to help your child learn how to communicate. Even better news is, with a dual diagnosis of Down syndrome and autistic spectrum disorder, communication intervention through the school for your child is almost guaranteed. This is because children with Down syndrome alone often "age out" of speech and language services in the school setting. This happens when a child is determined to be eligible for special education services under the label of mental retardation. When their language abilities reach a level that is seen as equal to their level of cognitive skill, they are often discharged from service, based on reports that they have reached their communicative potential. In contrast, children with autistic spectrum disorders typically continue to need support using language to meet their needs, as well as to apply the language and communication skills they learn to new or unfamiliar situations. Because of this, the majority of public school settings provide speech or communication-related services to children with autism throughout their school careers. If your child is determined to be eligible under both categories, she is likely to continue to qualify for speech related services and support such as augmentative communication systems for as long as she is in school.
Learning to communicate will look different for each child as options are chosen that build on your child's strengths. Focusing on the process of communication, rather than on the form communication takes, will yield many positive outcomes for you and your child. An intervention program with a focus exclusively on the development of speech and related skills limits the opportunities that your child will have to communicate independently. Excluding other techniques to focus primarily on speech creates a situation where other options may be ignored. Including techniques that are motivating and effective for your child, such as total communication (simultaneous speech and signing), low technology augmentative communication supports (e.g., picture symbols, communication displays), and higher technology augmentative communication devices greatly enhance your child’s communicative potential. Developmental milestones, such as "first sign" or "first point to a picture," aren’t likely to be found in child development manuals. However, attention to these types of early communication signals is just as important, if not more so, than attention to milestones such as "child's first word." It is communication in any form (not just speech) that allows your child to begin to express herself with clarity and independence. In turn, that communicative independence furthers her intellectual and social development.
Your child’s ability to communicate is a vital part of her life. It is essential to remember this as you advocate for your child. Communication is the key to everything in life. Without appropriate and effective language and communication skills or tools available, your child may become a passive participant in the world around her. She may be limited to the choices that others make for her based on what may be faulty interpretations of her communicative attempts. Over time, because she lacks control over these interactions, a feeling of helplessness emerges. Why bother trying? In educational literature, this is called learned helplessness. Some children even stop their attempts at communicative signaling because the choices are meaningless or they are ineffective or unsuccessful at using the communication tool. Others become frustrated and resort to physical means such as hitting, kicking or biting as their main way to communicate -- unpleasant, but it works. Remember your child can learn to communicate more systematically, and less painfully. By remembering this, you'll be able to work with her therapist to find a method that's most effective for her.
Regardless of the method of communication you choose for your child (such as signing, pictures systems or voice output), focusing on communication, rather than speech production alone, increases your child's opportunities to participate in meaningful, communicative interactions. She will express her choices and exert environmental control in ways that actively involve her. These experiences expose her to interactions she can use to increase her level of language comprehension. In addition, ensuring that your child has a way to independently communicate her wants and needs increases her level of functional independence, by decreasing her reliance on you as her sole interpreter. In turn, this gives you a break.
General Guidelines Intervention:
As your child begins therapy, keep the following general guidelines in mind. While a private therapist is likely to have more time to spend with you and may involve you more directly in your child's intervention, the following guidelines apply to therapy in all intervention settings.
You are an integral part of the process
Communication does not occur in a vacuum. It is critical that the techniques or methods used with your child during sessions are ones that can be carried over into her home, classroom setting and community. To make sure this carry-over occurs, you must be an active participant in the process. If you have questions about why your therapist chose a particular sign or symbol to teach or a particular strategy to use, ask. Don't be afraid to speak up if you think a particular recommendation is not right for your child, or if there are other communication skills you want your child to learn first. You and your therapist must work together by listening to each other and respecting each other's knowledge. A good therapist will listen to you and respect your knowledge of your child's needs outside of the therapy room just as you respect her knowledge and ability about communication strategies. Together you will work to develop communication objectives that fit your child’s developmental abilities and communication needs.
The "look" of your child's communication intervention may change over time
As your child grows and develops, her communication needs will change, and she will learn new skills. Because of this, the form of communication you begin with may not be the same one you use several years down the road. For example, while total communication is a common early intervention for children with DS-ASD, you may find that you are able to add methods such as picture symbols or communication displays. It isn't necessary to rely on any single method of communication for your child. All of us communicate using a variety of techniques (speech, facial expression, pointing, eye contact, body language, etc.). Your child will use a combination of methods (signing, vocalization, picture pointing, device use) to communicate, too.
All members of your child's intervention team must work together to be effective
Often, children with Down syndrome and autistic spectrum disorder work with a variety of professionals at school and privately. If your child receives therapeutic intervention both in and out of her school setting, it is crucial that everyone involved communicate with each other. While this type of coordination is important for all disciplines, it is essential in communication intervention. If your child is using communication displays with a therapist outside of school, but does not have access to picture supports in her classroom, she will make limited progress due to lack of consistency in her programming. In a situation like this, she will be confused and frustrated about communication in general. Who wouldn’t be? The rules for communicating must be consistent everywhere. Encourage all therapists involved with your child to talk with each other and with you. If meetings in person aren't possible, create a phone list of key people involved in your child's education and care, or set up a "communication log" in a binder that travels between home, school and outside therapy appointments. If you use a communication log, be sure that you write messages in it, too, so that you can give your therapists feedback about your child's progress at home and let them know about any new developments or additional concerns.
Useful Early Therapeutic Techniques:
Regardless of the method of communication intervention that you choose for your child, one of the first goals for speech-language therapy should be improving her ability to clearly express communicative intent. Demonstrating communicative intent involves producing a communicative signal that is directed toward a specific person to achieve a specific objective. Here are suggestions to enhance your child’s development of this important communicative skill:
Follow Your Child's Lead
Developing clear communicative intent requires that your child be able to establish and maintain joint attention, a state in which you and she focus simultaneously (or jointly) on the same object. One common frustration expressed by parents, teachers and therapists of children with Down syndrome and ASD is their child's or student's reduced attention span, and need to shift frequently from one activity to the next. A natural tendency in this situation is to "force" your child to maintain attention to a single activity or toy, or to redirect her shifting attention back to the activity or toy she started with. Surprisingly, results of a variety of research studies have shown that it is more effective to follow the shifting focus of your child's attention. Following your child's lead increases her understanding of words and their relationship to the world around her (i.e., her receptive language skill). In order to help your child develop the ability to achieve and maintain a state of joint attention, your chances are best if you let your child take the lead, while you find ways to engage her interactively with whatever object captures her interest.
For example, there are a variety of interesting, engaging and developmentally appropriate toys you might use while playing with your child to introduce the concept of "in" and "out." She may reject all of these options in favor of your purse -- an object you initially deem slightly less appropriate. If you follow your child's lead, however, capitalizing on her interest in your purse, you're likely to help her achieve joint attention. You might model spoken and signed phrases such as "tissues out," "lipstick out," "keys out," "pen out" and maximize her opportunity for attaching meaning onto a single word ("out"). While you always have to be sure that the objects your child chooses for play are safe, tolerating a healthy degree of flexibility and a willingness to change plans as your child's interests dictate will increase her chances for improving language comprehension skill.
"Sabotage: Some Situations
Although it sounds as though it runs counter to what any good parent might do, setting up some situations in which your child is bound to be unsuccessful actually serves a positive purpose in teaching communicative intent. For example, if your child is playing with a favorite wind-up toy, you can interrupt her activity briefly by placing the toy inside a tightly sealed, transparent plastic jar (old peanut butter jars work well for this purpose). Most likely, she will be unable to open this jar independently, and will try a variety of means (including shaking, banging, biting or rolling the jar) to try to get the toy. If unsuccessful in these attempts, a child who has developed clear communicative intent will seek out someone who can help, and signal the need for help by vocalizing, signing or handing over the jar for assistance. If your child is learning to ask for help, using sabotage in this way gives you an excellent opportunity to model clear communicative signaling. In this case, you might hold your child’s hands in your own and shape them into the sign for "HELP." (Similar opportunities can be created by keeping some of your child's favorite toys out of reach, so she has no choice but to signal you in some way if she wants to gain access to a preferred toy.) Creating situations in which your child will require assistance from you builds in opportunities for her to begin to learn to initiate clear communicative signals.
Use Portion Control
Similar to "sabotage," you can encourage your child to practice initiating communicative interactions by offering smaller portions of food or shortening the length of time she plays with a favorite toy. The objective is not to deprive her of food or play, but to set up opportunities for her to communicate with you or others. For example, during snack time give your child one or two goldfish crackers at a time, instead of the entire package. Once she has eaten the crackers before her, show your child how to request more to eat if she does not initiate this request independently. Depending on the method of communication you are using, this may mean that you model the word and/or sign "more," that you touch a picture of crackers, or that you push a key on a simple communication device that speaks a request for "more."
Another example of this is when your daughter is interested in watching a favorite video on the VCR. Sit with her and occasionally pause or stop the movie she is watching. When you do, if she does not signal you to start the movie independently, model a signal that would enable her to make the movie continue. Using this strategy requires a little patience because it disrupts the routine flow of interactions everyone expects. However, structuring your child's environment in a way that creates a need for initiating communication is an essential component that, over time, increases her independent functional communication skills and sense of control over the world around her.
Build in Choices
As mentioned earlier, when children do not have a way to meaningfully participate in interactions, there is a risk they will become passive participants in the world around them. They fail to develop a strong sense that they can make choices to make things happen in their life. Providing your child with choices within activities and throughout her day will prevent this and increase her sense of communicative power and environmental control. Choice-making opportunities look different depending on the method of communication being used, but the process of offering your child a choice remains the same. If your child recognizes packaging from preferred food items, you can use these to offer her a choice of snacks. In this case, glue empty packaging from two favorite foods to a piece of cardboard and attach the cardboard to the front of the refrigerator using velcro dots or magnet strips. When snack time comes, encourage your child to touch or point to the package that represents the food she wants to eat. A similar procedure could be used with photographs of preferred foods, individual picture symbols (e.g., Mayer-Johnson symbols), or symbols on a communication display or communication device, depending on your child's need. Regardless of the method of communication you are using with your child, the goal is to encourage her to express her own wants and needs, thereby teaching her that communication is a tool she can use to exert control on the world around her.
Parenting any child is a challenge, full of highs and lows. Parenting a child who is dually diagnosed with Down syndrome and autistic spectrum disorder brings with it its own set of challenges. Although many may focus on the things that your child can't do, or on the skills that your child won't achieve because of her disability, remember that your child can and will communicate. Keeping the focus on the process of communication, rather than on the form that it takes, will allow you to rejoice over each of your child's important communicative achievements. Whether she is signing, pointing, gesturing, vocalizing or activating a communication device, your child will be communicating with you and with the world around her, in her own way, and taking positive steps toward maximizing her level of independence. There are no words to express the joy you will feel as you watch your child's communicative potential increase. Maybe just a hearty "thumbs-up" sign will do.
Julie Bierman Gee is a speech-language pathologist who was a member of the Down Syndrome Clinic team at the Kennedy Krieger Institute in Baltimore, Maryland from 1995 - 1998. Presently, she is the assistant director of the Learning Center at the Boys' Latin School of Maryland, and in private practice.
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The article above is reproduced from the September/October 1999 issue of Disability Solutions, Volume 3, Issues 5-6. Permission was granted for its use on this web site. In accordance with federal copyright restrictions, the contents of this article may not be reproduced by photocopying or any other means without written permission from the copyright holder. © 1999 Disability Solutions