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By Liv Meriano, M.Sc. RSLP
When asked what she thought of her sister’s disability, 5-year-old Olivia paused, shrugged then turned to the reporter and said, “She’s a little different but she just needs a little help sometimes.”
My older sister Navia was born with cerebral palsy and was nonverbal. Being so close in age, we developed our own language of eye gaze, choice making and head tilts that signaled “yes” or “no.” This slowly developed into speech generated switches and then an assistive technology device mounted on her wheelchair. She learned how to request what outfit she wanted to wear, what Friday night take-out she wanted and share all the excitement of our family vacations with her classmates. As we got older, she certainly learned how to flirt with handsome doctors and order herself a beer!
My sister was the first experience I had with someone using AAC, and the power it allows someone to have a voice – not only to advocate their wants and needs, but more importantly, to socially connect with others and participate in society. It allowed my sister to reveal her colourful personality, exercise her independence and equally as important, reveal her competence to others who would otherwise underestimate her.
People with developmental disabilities like Down syndrome and Autism often have communication challenges too. Being strong visual learners, they can benefit from AAC intervention to help their speech, language, and social development.
So, What is AAC?
AAC stands for Augmentative and Alternative Communication. It captures all the things that support communication when someone cannot always rely on their natural speech or language skills to express themselves. The goal of AAC is to enhance the communication of individuals with complex communication needs.
If we think about it, we use forms of AAC all the time – we may not realize how much we communicate without speaking, whether it is giving a thumbs up to a friend from across the room or pointing a picture on the menu to signal to a waiter we want that delicious looking meal that is too difficult to pronounce!
Types of AAC
As mentioned above, there are several forms of AAC. It is likely that many students with Down syndrome will utilize more than one form of AAC to communicate. Unaided
Unaided forms of AAC take advantage of all the ways you can use your body to communicate. This includes using facial expressions, gestures, vocalizations, body language and signs.
Aided forms of AAC take advantage of external tools or devices. Examples of low-tech forms of AAC are things like picture symbols, communication boards or writing with a pen and paper. Examples of high-tech forms of AAC utilize technology like iPads or other speech generating devices.
Why would someone need AAC?
People with Down syndrome can have difficulty being understood for many different reasons. Difficulties could be related to speech; that is, the sounds someone makes using their mouth. AAC is often considered when speech intelligibility is an issue. ‘Intelligibility’ is a word often used when talking about AAC, but it has nothing to do with intelligence. Intelligibility simply means how well someone can understand. So, if someone gets across their message clearly, their intelligibility is high. If it is difficult to understand them, we would say they have reduced or lower intelligibility. Intelligibly is usually moderately to severally reduced in people with Down syndrome.
Many factors can affect someone’s speech intelligibly; for instance, where or with whom they are speaking. Typically, people who are more familiar with that person will report higher intelligibility, rather than people who are less familiar with them. Speech difficulties in Down syndrome are commonly related to problems with:
Phonology refers to someone’s sound awareness and knowledge. When the motor skills for speech cannot keep up with the demands of a word, the brain will create ‘rules’ to simplify speaking. For example, leaving off the end sounds of words so “duck” becomes “du.”
Articulation refers to difficulty placing the tongue, lips or jaw where they need to go. For example, “k” is a difficult sound because the back of the tongue needs to hit the hard pallet, so someone may substitute a “t” sound because it is easier.
Apraxia refers to a motor planning issue which is commonly seen in Down syndrome. The brain sends messages to the mouth but is unable to sequence movements for speaking when asked which often results in unusual or inconsistent errors. For example, one day a child may say “dud” for duck and another day could say “uk.”
Dysarthria refers to a neuromuscular disorder that affects how one can clearly execute speech. Many children with Down syndrome exhibit hypotonia which could make their speech sound mumbled, quieter, hoarse or breathy.
For many children with Down syndrome, the causes of speech difficulties are related to more than one factor. Another benefit of AAC is that it can help support someone who has difficulty expressing themselves using language. Language is the words and sentences we put together.
Receptive language is often better than expressive language in individuals with Down syndrome. That is, people with Down syndrome often understand a LOT more than they can express. People with Down syndrome are strong visual learners, so AAC can help them better communicate with others using words or putting together sentences to be better understood, if they have an alternative way to do so. No matter the way someone communicates, no one should have no access to communication!
AAC Myths and Realities
There are many myths about AAC, which can impact the willingness of a family to pursue it for their loved one. Thankfully, due to research, we confidently know more about the positive outcomes of AAC for individuals with complex communication needs. Below are the most common myths we come across:
AAC hinders or stops further speech development - Myth!
Fact: AAC does not stop the development of speech or someone’s motivation to use their speech. In fact, it may enhance the development of natural speech and language when intervention is multimodal and incorporates forms of AAC.
AAC is a “last resort” in speech-language intervention - Myth!
Fact: AAC can play many roles in early communication development. Research has shown it to have better outcomes in encouraging more spoken output, expressive and receptive language and decrease frustration and challenging behaviors when introduced early on. There have also been studies that show significant benefits in socialization, independence, and self-esteem.
AAC is only for children who are nonverbal - Myth!
Fact: AAC is for any person who does not have reliable communication 100% of the time. Meaning anyone whose natural speech or language skills do not meet their needs to participate in all aspects of their life, could be a good candidate for AAC.
If your loved one does not have effective communication, consider referring to an SLP for an AAC consultation. They will do an assessment of your child’s speech and language abilities and recommend what system best fits your child’s needs.
Strategies for the Beginning AAC User
If your SLP has recommended an AAC system for your child, you might be wondering, what do I do now? Or you might be thinking – I do not need to use an AAC device with my child because I always know what they are saying!
Parents know their child best – there is no doubt! However, we cannot assume our AAC users do not have more to say. Using AAC at home also gives our users more practice with their system – whether that’s picture symbols, signs or a speech generating device, so they can use it more independently and with other people who are less familiar with them and might not know what they are saying.
Below are some tips that are intended for individuals who are in still learning their AAC system and are not yet independent communicators. 1. Always Have It Available
Where is your AAC system at home? It is important to give your AAC user access to an AAC system all the time. That means that it is out, charged, within reach or always in the same place.
2. Model, Model, Model
As we know, children learn how to speak by hearing their parents and other people around them speak all the time. With AAC learners, they also need to see what it looks like to communicate using their AAC systems in interactions. We can’t expect them to learn forms of AAC without being shown how. You do this by pointing to words on their system when you talk with your AAC user or simultaneously signing as you speak. This is called aided language stimulation. You don't need to model every single word you say. Instead, model the most important or core words. Do this at or slightly above your AAC user’s language level so they start to learn their system too.
3. Find Opportunities to Use it in Your Day
Once you feel comfortable modeling AAC, find natural opportunities to use it in your daily routine. Your AAC user will learn their system faster, the more you build in opportunities for them to use it. And what better way to build in natural opportunities, than at home? Think about all the different words you could model! The more opportunities they get to practice, the more likely they will generalize their language skills with different activities and people.
ASHA (2020). Augmentative and alternative Communication. American Speech-Language Hearing Association. https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589942773§ion=Key_Issues
Barbosa, R., de Oliveira, A., de Lima Antão, J., Crocetta, T. B., Guarnieri, R., Antunes, T., Arab, C., Massetti, T., Bezerra, I., de Mello Monteiro, C. B., & de Abreu, L. C. (2018). Augmentative and alternative communication in children with Down's syndrome: a systematic review. BMC pediatrics, 18(1), 160. https://doi.org/10.1186/s12887-018-1144-5
Beukelman & Mirenda. (2013). Augmentative and alternative communication: Supporting children and adults with complex communication needs (4th ed.). Baltimore, MD: Brookes.