One of the most difficult things to cope with as an autism mom was my son’s inability to speak. I remember hoping and praying that speech was going to develop and reassuring myself that it was a matter of time and the words would emerge by perhaps the next holiday or birthday.
I recall having tearful moments while Christmas shopping, when I overheard other children asking their moms for toys on their Santa list, or while grocery shopping and hearing little voices asking for favorite snacks. The speech never came and attempts to solicit it by extensive modeling and encouraging my son, Patrick, to imitate me only added to the feelings of helplessness and frustration.
I know I am not alone. There are many parents and families feeling equally overwhelmed and helpless when they first become aware of their children’s language and other developmental delays and receive the autism diagnosis. The current estimate indicates that about 30 percent of children diagnosed with autism spectrum disorder (ASD) will not develop functional speech. There are thousands of parents out there in search of solutions on how to give their children a voice and empower them with self-expression.
It has been a long, often trying yet exciting journey for us as a family, with many obstacles and opportunities along the way, and a steep learning curve for all involved in teaching our son to express himself. Patrick responded favorably to sign language at the age of six. His first “words” were requests for food and favorite toys. Currently, in addition to some signs, he primarily uses a communication app— Prolqouo2Go. He has evolved from a child who used to “hide” under the table at school, shy away from social interactions, and act like a defeated and helpless human being to a strong-willed and persistent 15 year old who loves to communicate and to be heard.
Giving Patrick a voice is work in progress that requires ongoing interventions, supports and collaboration among everyone involved in his life, including his family, school team, and private therapists. Over the past few years, we have worked with a number of speech pathologists specializing in augmentative and alternative communication. Their guidance in terms of assessing needs, setting up the device, establishing appropriate goals and treatment plan, and teaching us as parents how to be effective communication partners has been invaluable.
Finding a new way to communicate
Augmentative and alternative communication (AAC) is a term used to describe various methods of communication that can help people who are unable to use verbal speech, or have other language difficulties, to communicate. AAC systems have multiple components and may include any of the following: symbols, signs, gestures, some spoken words, a visual schedule, a core language board, and speech-generating devices. The systems can be unaided—sign language and gestures, and aided—picture cards, photos, visual schedules, and speech generating devices.
A child learning to communicate with the aid of AAC requires access to core and fringe vocabulary that is ever expanding and growing with new opportunities. Core vocabulary consists of words used to communicate 80 percent of everything we say, including words like go, want, I, here, there, it, this, that, on, help, where, all, stop.
The larger portion of the vocabulary, used about 20 percent of the time, is fringe vocabulary more specific to the user and particular situations or activities. Examples include family and teachers’ names, places they go to, favorite food, drinks, or activities. For a child to learn to be a functional communicator, he/she requires access to a robust language system that allows him/her to formulate grammatically correct utterances that include nouns, verbs, descriptors and prepositions, and vocabulary necessary to engage in authentic communication. The vocabulary has to be personally relevant, meaningful and motivating.
Ways AAC can improve communication
There are multiple benefits for using AAC. In addition to giving the user means of expressive language, AAC enhances receptive language, reduces frustration and behavior problems, empowers the child, facilitates social interactions, supports learning and cognitive skills, and increases overall enjoyment and engagement in life.
A child in need of AAC always requires appropriate assessment, which includes determining the right fit in terms of tools, devices and strategies. Assessment is on-going dynamic process that needs to include everyone involved in the child’s life—family, school team and outside therapists. The various skills that need to be examined and baselined include receptive and expressive language, motor and visual skills.
The AAC plan and goals evolve with the child’s progress. New vocabulary is introduced, taught, and programmed onto the device to reflect the ever-changing needs and meet the demands of the environment. The long-term goal of attaining independent, spontaneous communication is a process that may involve learning the meaning of words, combining words to make phrases and sentences and learning the multiple functions of language that include requesting, social etiquette, information sharing and seeking, answering questions, commenting and protesting.
The child needs to have access to a robust language system that allows him the opportunity to explore and experiment with the vocabulary just as a typically developing child experiments with spoken language. For children using speech-generating devices, the device needs to be charged and available at all times in all settings, including home, school, and community.
A separate iPad designated strictly for communication is preferred as it eliminates any distractions or temptations to access other apps. Having a backup, such as laminated copies of the homepage/core words and folders/fringe words, is helpful in the event the device malfunctions. The device needs to be portable and travel with the child wherever he goes.
Creating an AAC friendly environment requires daily access to vocabulary, communication opportunities, literacy, symbols, words, schedules and supportive communication partners. Every person the child interacts with needs to expect communication, presume competence, pause and wait for response, and encourage and honor all communication attempts, such as gestures, signs, vocalizations, word approximations, and utterances on the device.
It is important to provide fun and relaxing atmosphere by maintaining appropriate pacing, speaking in even tone of voice paired up with accessing and pointing to words and symbols on the child’s device and allowing wait time for the child to respond.
The value of communication partners
Communication partners play a key role in supporting and expanding the child’s language and communication skills. Communication is a dynamic, spontaneous and interpersonal process that happens in the moment. We communicate for a variety of reasons that include expressing needs and wants information seeking and sharing, establishing and maintaining social relationships, and social etiquette.
One of the most effective and evidence-based teaching tools is Aided Language Stimulation. Typically developing children have the natural benefit of thousands of hours of modeling of spoken language by parents and other people in their environment. Often times, emergent AAC communicators do not get the benefit of language being modeled utilizing their mode of communication. Aided Language Input pairs spoken language with it also being expressed using the AAC system.
There is no more powerful way of sending the message that we value the child’s mode of communication than by actually using the modality ourselves. MODELING language on the device is probably the most important teaching tool we can provide. Emergent AAC users need a lot of modeling and input before they are able to provide an output. Supportive communication partners must always PRESUME COMPETENCE by assuming that the AAC learners know and understand more language than they are able to demonstrate.
It is important to model grammatically correct utterances and different functions of language during daily activities in the home, at school, and out in the community. Modeling communication “in the moment” and in natural environment is vital to teaching a child authentic language skills.
We can utilize multiple strategies, including expansions or modeling words to add information to what the child already uses on the device. For instance, when a child requests an item—I want a car, we can add the color—red car. Modeling on the device allows us to learn the system, including where the icons are located and detect its limitations by identifying missing vocabulary we need to add. In addition, when we become users ourselves we can appreciate the effort and time required to communicate in that fashion.
Producing chances for communication
Creating multiple communication opportunities throughout the day requires contriving situations that are most likely to elicit communication. We can put toys out of a child’s reach, or purposely hide a piece of favorite puzzle or lock up favorite toy so that the child has to request help to attain it. In addition, we need things to talk about. Watching a short video, reading an interesting story together, or engaging in fun activities opens the doors to use and model various functions of language.
- Requesting: I need help; I want apple
- Commenting and protesting: I like that; No, leave me alone
- Teaching to use describing words: Orange popsicle; The cookie is delicious
- Teaching numeracy and quantities: I want two cookies; more water, please
- Social etiquette: Hi, nice to see you; thank you
Emergent AAC users benefit from hearing communication partners verbalizing their thought process and difficulties as they navigate the device: Where is that word? Let me look in the food folder. Getting everyone in the child’s environment on board in terms of modeling on the device and using it all day and every day is fundamental to the child’s communicative growth and progress.
There is no better way to empower our children than to give them the means to express themselves freely and be able to say what they want to say, when they want to say it. Having a voice is a basic human right that enables every person to be heard, understood, and fully included in the community.
The following resources provide a wealth of information on the AAC basics and implementation:
- PrAACtical AAC – supports a community of professionals and families who are determined to improve the communication and literacy abilities of people with significant communication difficulties (praacticalaac.org)
- Communication Strategies for Children with Autism, Unlocking Language through Technology – Joanne M. Cafiero, Ph.D. (Joannecafiero.com)
- Simplified Technology – resources from Linda J. Burkhart (Lburkhart.com)
Ewa Omahen is a resident of Novi, Michigan, and a mom of a 15-year-old son with autism, Patrick, who attends Northville Public Schools. He uses a communication app and sign language to communicate. Ewa works as a psychologist for the Walled Lake Consolidated Schools. She is an avid advocate for all “differently-abled” children. Patrick and the students she works with continue to be sources of hope and inspiration.
This article was featured in Issue 71 – Navigating A New Year