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Augmentative And Alternative Communication

Read more about Ewan's experience with augmentative communication in the new book Brains, Trains & Video Games:  Living The Autism Life now available at Amazon and Barnes & Noble.
 
 
Most people have not heard much about Augmentative and Alternative Communication with the exception of sign language. AAC, despite the big complicated words, is just an alternate way of communicating with others that doesn’t involve using your voice. When typical people communicate they do speak using their natural voice but communication involves a lot more than that, especially for children on the Autism spectrum. For one, there’s eye contact that can be very hard for children on the spectrum. Two, there’s a give and take to a conversation—you say something and then it’s my turn to speak and so on. Third, usually when we are talking to others we provide enough information for the other person to understand the gist of what we’re saying. In other words, I don’t just yell out ‘Green truck!’ and expect you to guess that a guy in a green truck almost sideswiped me on the interstate. I give just enough details of the story to fill you in on the event and to where you can follow along. 
 
All of this is very hard for children on the spectrum. First and foremost, many children with an Autism Spectrum Disorder don’t speak. It’s not that they can’t make sounds but more like language just isn’t their priority. Sometimes a child on the spectrum doesn’t use their natural voice to ask for things—even if they really, really, really want it. A typically developing child is going to get your attention, point to something, drag you over to it, and then depending on their age tell you what it is they want or use enough jargon that you can figure out. This is just not the case with kids on the spectrum. 
 
For those living or caring for a child on the spectrum everything, from what they want to eat, to which body part hurts, to what they want to play, to who they want to go see is ALL a big guessing game. And if you guess wrong—meltdowns ensue. Behaviors are communication remember. Now all these children and their families need to have an alternative way of communicating besides just talking. Let me repeat that—all of them NEED to have an alternative way of communicating. You standing there repeating over and over and over, say ‘I want a cookie’ is just downright frustrating for you AND your kiddo. So what can you do—what are the alternatives to using your natural speaking voice?
 
Sign Language
First, there is sign language. The one AAC that almost everyone has seen and heard of before. Sign language is an excellent alternative to speaking for these children AND it can be taught very, very early when your child is just a baby. The fad these days in Los Angeles is to teach babies as young as six months to use sign language in the hope of creating some braniac, communication dynamo of a child. What you can walk away with from that example is that babies CAN learn sign language early and can add new signs all the time. Do I think ALL babies need to learn sign language? No. But if your child has a speech delay of any kind and is having behaviors because of that try to reduce that frustration level by providing a way of communicating wants and needs. 
 
Never, never let someone tell you that teaching your baby or speech delayed child sign language is going to keep them from speaking—because it just ain’t so. There are tons of articles written and research done that proves sign language only helps develop speech where possible, and in no way inhibits a child from using their voice. For one, it takes the pressure off. If a child who is constantly being hounded to say this or say that and it’s not happening—I’m willing to bet they are just as unhappy about it as your are and the frustration at not being able to speak is just going to get worse and worse. 
 
Let me ask you this, do you honestly think the super-wealthy celebrity types are going to teach their child sign language because they know doing so is going to create a mute child? No way. Those types are actually at the other end of the continuum thinking that this is going to raise their kiddos IQ by 10 points. So teach sign language early and often. At the very worst, you have a child who speaks and knows sign language and can communicate with children in their classroom, at the playground, or wherever who must use sign language. You’re opening a whole new world for your child by providing sign language as an alternative and hey, maybe he / she will make a new friend they otherwise might not have who uses sign language to communicate.
 
OK—so you’ve decided sign language is a good thing and want to start using it with your kiddo. There’s a great book called www.amazon.com="" href="http://%3ca%20href=%22http//www.amazon.com/gp/redirect.html?link_code=ur2&tag=theautismlife-20&camp=1789&creative=9325&location=/gp/search%3F%26index=books%26keywords=Signing%20for%20Kids%26_encoding=UTF8%22%3ESigning%20for%20Kids%3C/a%3E">Signing for Kids by Mickey Flodin that I would recommend as a good place to start. Sometimes though you will find that your child isn’t signing exactly what you are. It may be close to what you are signing but sometimes it’s way, way different and he or she may be making his or her own signs. This can be confusing; especially in school or places where he or she may be expected to use the same uniform sign language as everyone else. 
 
For example, at the request of our SLP, we started teaching Ewan sign language at 15 months. The first one was ‘more’ and he grasped that one pretty quickly. Later, we added ‘help’ to his list of signs but he never did use the appropriate sign—he made his own version. Now, we as his parents knew what he meant but others, who knew sign language, did not. The other problem you’ll come into using sign language with children on the spectrum is due to fine motor skills. Sometimes it’s difficult for little hands to make some of the signs. If you’ve got a child with a fine motor delay or some coexisting diagnosis like Apraxia, signing could be real, real difficult and you could see lots of signs that are approximated or made up. The other drawback to sign language is that not everybody knows it. If you are at McDonald’s it’s unlikely that the person behind the register is going to understand your child when he or she signs something. So now what??
 
Picture Exchange Communication Systems (PECS)
The next type of AAC that’s often used with children on the spectrum is a system called PECS. PECS stands for Picture Exchange Communication System and is considered a no-tech communication system. A no-tech system is anything that doesn’t use a battery, and can include charts, pictures, and graphs. PECS is great for young kids because they can independently go and pick up a picture or point to a picture to tell you what they want. There are tons of ways to inexpensively add PECS to your life. I’ve heard of parents gluing magnetic strips to back of pictures and placing them on the fridge. We went with Velcro and poster board that hangs on our front door, and in two places in Ewan’s bedroom. The gist is to get your child to point to or bring you the photo or symbol that will tell you what he / she wants or needs. 
 
There are computer programs, like Boardmaker from Mayer Johnson, that you can use at home to print off symbols, have them laminated and start using them immediately. Others use real photos that they have taken of everyday objects like food items, the places they go, and family members. Our e-store currently has a free download of some real photos available to download and use with your child (we will be adding a full directory of photos soon). Either way—symbols or real photos, or a combination of the two, is a good way to start giving your child an alternative way to communicate. Some people make books that a child can carry around and can flip between sections and point to what’s needed / wanted in various situations. 
 
PECS can be used more than just as a way to communicate wants and needs. PECS can also be used to help a child understand routines and transitions. Transition is fancy way of saying, where your going/ what you are going to doing next. These kids can have HUGE problems with transitions. It’s just a part of the unknown that sends your child over the edge into the meltdown zone. 
 
Let’s just say your child does great at home where he or she knows where everything is, the routine is fairly the same (i.e. you get up have breakfast, play outside, have lunch, etc, etc, etc…) but the second you step out of the safety zone your little one loses it. Well, try to think of it this way. If you’ve got all these other sensory issues like your hearing is super duper sensitive, your clothes are bugging the heck out of you, and a whole bunch of other things are going on inside your head—it’s almost bearable if everything else in your life goes exactly as planned and everyday you wake up and the rest of your life is the same. 
 
The second you take away the predictability—the house of cards comes crashing down. Pictures can help your child with this. Taking pictures of everything and everywhere you go, step by little bitty step, is going to PREPARE your child for that unpredictable stuff and help them deal with it. If you know that when you wake up, you’re going to have to go to the bank, the store, and you have to drop a book off at the library (yes people do still do that). Make sure that someplace in your house you have all this up where child can see it, preferably the front door. Put the pictures up in the sequence that you plan on going in—the bank first, then the store, then the library and talk about them in that order. 

 
Then when you get to the car you may have to provide your child with another set of pictures that shows the even more detailed steps such as driving up the bank window, waiting for a sucker, and then driving off to the store, getting out of the car and into a cart and so on and so forth down the list. Is this time consuming? You bet but if it works you’ve just made YOUR day and your CHILD’S day so much better. 
 
How do you start this you might ask? Well, as I have done, I bought a kick ass digital camera and starting snapping shots of pretty much anything and everything. Ewan used to have a huge issue with the elevator. It was this weird love-scared to freakin’ death relationship. He desperately wanted to ride them and would flip out if you walked past one but once inside and the door closed—oh yeah, you guessed it—we entered the meltdown zone. 
 
Finally, I had enough of trying to find alternate routes through buildings that didn’t include walking by an elevator and dealing with the meltdown if we did happen to see one. I decided to take pictures of the entire process—walking up to the elevator, pushing the button, waiting for the doors to open, walking inside the elevator, pushing more buttons, being inside with other people (who just might bump into you), waiting again, watching the doors closed, moving up, the doors opening and getting off (or even having to watch others get off while you wait for the right number). Whew, that’s a lot of stuff you say. Yeah, it is. But that’s the kind of step-by-step photo story that you are going to have to create to prepare your child for what’s going to happen. Welcome to the world of the picture story. 
 
Picture stories are a way of using pictures to explain what’s going to happen in a story like fashion. So the object is to create a little mini-book that has photos and words that anyone can read (like a teacher, daycare providers, grandma and Aunt Mildred can read to your child and it’s the same story). Maybe you’re thinking AHA this is it, this will magically change my child’s life forever. It can, but there are a lot of drawbacks and modifications that may need to be made. Does this mean that you shouldn’t try it—heck NO. It just means that you need to be aware that there are challenges to using PECS. The number one thing I’ve heard about PECS and children on the spectrum is INTEREST. Many of them appear to be completely disinterested in using them. This could be due to age, appropriate level of development and expectations about using PECS, or just giving a child the photos without explaining or demonstrating anything. If it doesn’t work at first, try it again at a later date. Just because it didn’t work once, doesn’t mean that it will always be that way.

 
PECS unfortunately, does have its drawbacks. PECS is a lot about giving a child choices, preparing for transitions, and even creating some phrases. However, I personally feel that there are limitations to PECS, as they do not fully allow children to express themselves. In order for that to happen, a child would have to have access to thousands of vocabulary options to talk about whatever comes to mind. You would have to carry around boxes full of symbols or photos to accomplish this. For a child who may have a lot to say, PECS can only take them so far. PECS is a good way to start, always great for transitions, and despite its limitations, PECS works great when used in conjunction with other augmentative communication devices (multi-modal communication).
 
Voice Output Communication Systems
The next step after no-tech comes low-tech and high-tech communication devices. Low-tech and high-tech is not necessarily better, but they do have their advantages including quick, easy access to thousands of vocabulary words to create sentences and phrases and communicate with others. Low-tech and high-tech devices cover a wide spectrum of technology such as voice output through dynamic displays. Users push a button and the device ‘speaks’ (voice output). The voice output on these types of devices can be digitized speech (you can record your own voice) or synthetic speech (think Professor Stephen Hawking or maybe even the computer in War Games). Advances in technology have made augmentative communication an exciting field. The synthetic voices are getting better, granted they’re not perfect, but they have made advance in the computer sounding voice to make it sound a little more natural. Most people are not even aware of the fact that these devices even exist. We’ll start with devices like Tech Speak. 
 
Tech Speak is manufactured by AMDi (Advanced Multimedia Devices, Inc.). This device works off the premise that a person can insert overlays (sheets of thick paper) that fit into the device so that the symbols are situated over a ‘button’ area. These are known as ‘static displays’. A person who speaks must record all the words or phrases into the device. Then when a user pushes a symbol, the device speaks (creates voice output) and ‘other’ people can easily understand what the user wants, needs, etc… You can print out overlays at home using several computer programs for ease of use and programming. There are even devices like these that can be worn on the wrist for very active young children to use on the playground or out and about. Several companies make these types of devices including Dynavox, Prentke Romich, Mayer Johnson, Ablenet, Enabling Devices, Saltillo, Frame Technologies, and Zygo Industries to name a few.
 
Another option is to consider a device that has a dynamic display. Dynamic displays are something that most of us actually have seen—we just might not have realized it at the time. Every time you go to any store and check out with one of those self-swipe credit card machines that allows us to touch the screen and push the screen for our choice. A communication device that uses a dynamic display has a screen that changes every time a user touches the screen. The screen can change to new vocabulary choices or opens a popup or new page similar to way Windows applications do.

 
When it comes to voice output communication devices there are basically two camps: one based on a dynamic display system that open a new page or popup system (in a hierarchical fashion) and one based off Minspeak (Prentke Romich). My son uses a device called a Dynavox MT4 that utilizes a page or popup system. Each symbol use press on the screen opens up a new page or popup with more vocabulary or phrases. Minspeak, also known as semantic compaction, utilizes a different method of accessing vocabulary quickly. Minspeak basically requires a person to learn a sequence of accessing buttons on an overlay to produce vocabulary. One symbol can have multiple meanings. 
 
Both systems utilize symbols to access vocabulary. My experience with both types of these devices and those who use them is that you’re pretty much able to deal with one or the other. It’s kind of like being a Coca-Cola person or a Pepsi person; you usually don’t drink both interchangeably. Neither system is perfect. All communication devices have their drawbacks. With communication devices you should know that: they require batteries that will have to be charged, you will have to program information or voices into them, the rate of conversation is still slow, and they are expensive. 
 
The great thing is, is that there are options for the person who needs an alternative way of communicating. There are all kinds of people out there with different ways of thinking and all of the types of augmentative communication that can help fill different needs. No one device is ‘better’ than the other; rather, think of it in terms of finding the right ‘fit’ for your child and their needs. For those of you who are interested in augmentative communication check out YAACK (Augmentative and Communication Connecting Young Kids) where you can find a comprehensive breakdown of the evaluation process to get a low or high tech device, funding issues, and issues with education. In Illinois, be sure to check out the Illinois Assistive Technology Project based out of Springfield.
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