“Communication is life. It is the only vehicle we have for connecting meaningfully with others.”
Joseph Grenny, author
Our daughter began speaking with words when she was 3. When she was six, she spoke mostly with sentences that she’d memorized or with short words and phrases. She shared requests or comments about what she wanted or was doing in the moment. She never spoke about the past or future.
As an experiment one day, I wrote a story about swinging and sliding at the playground using Pictello, an app that allows you to combine images and text into a kind of photo essay. I was very surprised to hear her (and her younger brother) start using the words I had put in the story. I continued to write stories about our adventures, and then one day I gave her a set of photos about her trip to the Forks, with no text. To my delight, she happily filled it in with her own ideas, using her own words.
That was one of my first personal encounters with AAC – Augmentative and Alternative Communication. AAC really just means giving people who have communication disabilities other ways to share their thoughts and ideas. I soon learned that like my daughter, many people with autism communicate better in some ways than in others. AAC is helpful for a the whole range of speaking ability – from nonverbal people who use sophisticated language devices, to mostly verbal people who use typing or writing on days when their verbal words aren’t flowing.
The ability to communicate is possibly the most important thing we can give our children. It means they can connect with other people, show what they understand, make their thoughts known, and be meaningfully occupied and productive. On the most basic level, communication is necessary for safety and wellness.
I wanted to learn more about what the opportunities and obstacles are, and here’s what I found out:
AAC can be aided or unaided. Unaided AAC is any system that doesn’t require any materials or devices. Unaided AAC might be as simple as gestures and facial expressions, or as complex as American Sign Language. Aided AAC is communication using materials of some kind. It could be drawing pictures on a scrap of paper, typing, or a communication system like PECS or Proloquo2Go.
In practice, using unaided AAC can be limiting because not everyone understands. But it’s best for a person to be able to use some unaided AAC strategies, so that they can communicate at times when their aided device isn’t available or convenient.
How do you decide on a device or a strategy?
The best starting point is an assessment, with the help of a speech-language pathologist. They will look at your child’s strengths, how they already communicate, and what their needs are. An SLP will also help you think about what your child might need in the future as their abilities grow. A speech-language pathologist can also help your child begin to use the chosen strategies, and provide some training for you and the school team.
In order to begin communicating, a child will have to learn about how to use the device, and what the symbols mean. Especially if they are new to social interaction, they will also need to learn how to put ideas together, and how to engage with people in communication – things like getting people’s attention, when and how to share an idea, how to take turns, and how to communicate for different purposes. That’s especially important, as sometimes people using an AAC device tend to stick with just refusing or requesting and labeling things. They might not be used to communicating to share ideas or information, or speaking in social ways to build relationships. That’s why it’s helpful to have therapists supporting the child, family and school through this process.
The person using AAC also needs communication partners – family, friends, classmates, teachers – who will need to learn how to use the communication system, and how to encourage the user – so that the child has someone to talk with!
Some form of AAC is helpful for anyone whose ability to use speech is not the same as their potential for communication. Some people with autism are quite verbal, but like my daughter, who find they can sometimes write more easily than they can speak.
At the other end of the continuum are people who do not speak and may appear to have no interest in communicating. However, appearances can be deceiving – . There is no one who would not benefit from the ability to communicate. There is sometimes a belief that using AAC might slow down the development of verbal speech – that is not true. In fact, the research is clear that the opposite is true. Using alternative communication helps people communicate better, both nonverbally and verbally, if they have the capability.
There are also some clinicians who think a person has to be ready, cognitively or developmentally, first – also not true, although the way a person currently communicates might affect where you would start, or the kind of system you would choose. Someone who throws things might not be a great candidate for an iPad, for example. But there are lots of other, low-tech ways to support communication. And if a child is at the initial stages of social communication, why not at least give them a way to refuse, or get attention, or request what they want? The Canadian Speech-Language association has affirmed that there are no minimum linguistic or other prerequisites to introducing AAC tools or strategies.
Everyone can learn to communicate better than they already do.
There’s Lots We Don’t Know.
AAC is not a magical tool that unlocks the ability to communicate instantly. Implementing a system is a lot of work and takes time, practice, and thought, for both teacher and student.
Part of the problem is a lack of understanding of the potential of nonspeaking people. There is also a lack of awareness of options that are available to work around communication barriers. Another difficulty is making sure that devices and systems are user-friendly in complex home and school environments.
Another barrier is in the availablity of expert help. In the United States, the Individuals with Disabilities Education Act (IDEA) requires that assistive technology be considered as part of planning for all children with disabilities – if it’s determined that AAC is required, the school must purchase devices or materials and train staff. There is no similar requirement here in Canada, although Manitoba’s Accessibility Act is moving towards it, with a requirement for businesses and organizations (including schools) to consider communication needs of clients. The document specifically mentions print versions of information, text to speech, captions and ASL. Assistive devices must be supported.
However, as anyone whose child with communication challenges knows, the clinicians in the school system are limited in terms of the time they can spend on any one child. If we were to follow a guideline like IDEA, they would be swamped beyond managing. So the question is, how do we use our existing resources to manage communication support for all who would benefit? Missing opportunities to help students whose quality of life could be changed because of a lack of resources is not acceptable.
“…there is a growing body of science that suggests that we might have gotten it wrong, at least some of the time, for some individuals. I think that it is not okay to get it wrong for even one person; when we talk about communication, we are talking about peoples’ lives, no less than that…” (Mirenda, 2008)
As parents, we work with one child at a time. We seek out the resources that might help our own child.
The Open Access Resource Centre is a helpful organization in Winnipeg that provides some training and loans out devices for people to try. To access their services, the OARC ask for a referral through an SLP, usually connected to the child’s school, but a private SLP could also help you get started. According to them, the really necessary factor is one adult who is willing to learn about AAC and do the consistent work to support its implementation for a child.
It’s also helpful to explore resources online – websites on AAC use, or blogs by families using AAC can be very useful. Here are two starting points:
If you think your child could benefit from communication support, don’t wait – look into it. It might make an enormous difference to your child’s quality of life.