Give Me a Voice: Helping children with Autism find their voice

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CHAPTER 1: HOW TO NAVIGATE THIS BOOK

Given the large amount of material housed in this text, I divided the book into two main sections. The first section contains chapters focused on vital foundational concepts before selecting and using an augmentative communication system to promote verbal language development. I recommend reading these chapters first in the order presented. Take your time in reading each chapter, especially the chapter regarding increasing your loved one’s motivation to communicate. You will surely be very tempted to flip directly to your augmentative communication system of choice but I would highly recommend spending some time on these chapters first because they offer tips on laying the foundation needed for long-term success.

The next section could be considered the meat of the book. These chapters focus on three main forms of augmentative communication that exist today: Picture Exchange, Device or tablet application that is picture based and Device or tablet application that is type-to-text-based. Step-by-step instructions on how to teach each augmentative communication system are fully explained along with helpful examples and scenarios. In order to allow a reader to go back and forth between different systems as easily as possible, similar examples are provided across all three different systems. Frequently Asked Questions (FAQ) have been placed at the end of each augmentative communication’s chapter. The appendix holds a Quick Reference Guide that provides all of the steps in an easy to read chart format.

When reading these sections, our recommendation is to read from the start until you feel that you have reached the teaching step that you would like to start with and then stop reading and mark your place as you start to apply the steps with your loved one, student or client. The Quick Reference Guide is located in the appendix as a resource to be used as well at this point. As your loved one starts to progress you will then go back to the main body and read on for instructions and examples on the next teaching step and so on and so forth. We feel that this reading style will help the reader better digest and apply the large amount of information that is provided.

The danger with reading the main body of each system start to finish is that there is a high amount of material presented most of which will be meaningless if your loved one has yet to learn the first steps in this process. We do understand that some readers will enjoy reading the entire section so please engage in the way that you feel comfortable as a reader. You will certainly run into issues and questions along the way. The Frequently Asked Questions (FAQ) section should be referenced to help guide you. If your question is not answered in this section, I recommend visiting our website (www.givemeavoice.net) for more information. Our website will also contain an interactive reader forum where you can engage with other readers to share your experiences, questions, concerns, etc. with others who are also going through the process.

The goal of this book is to help your loved one find their verbal voice through the use of augmentative communication so our team is dedicated to answering any and all questions that you might have. I hope that this quick chapter will allow you to best utilize all of the contents of this book.

CHAPTER 2: BUILDING THE MOTIVATION TO COMMUNICATE

I truly believe this chapter about motivation is the most important chapter in the entire book. In my opinion, building a learner’s motivation to communicate is the single most important factor to consider when trying to allow that learner to find his/her voice. So many times professionals and parents will focus more on HOW to teach a learner and less on HOW MOTIVATED the learner might be to actually pay attention to their teachers. In the end the chance of a learner making progress in any learning area has, in my opinion, at least 80% to do with their motivation and 20% or less on how they are taught.

To demonstrate the role of motivation and learning I would like for you to picture this scenario: your boss asks you to take a test and tells you that you must pass it in order to keep your job. How motivated would you be to learn strategies on how to pass the test given in a training class?

Now picture your boss telling you that by passing this test not only will you keep your job but you will be given a 20% raise. Are you starting to pay attention more? What if that raise increased to 50%? 100%? Can you start to feel your motivation rising higher and higher as the level of reinforcement goes up and up?

And as your motivation rises, the quality of HOW the teacher is teaching you actually starts to matter less and less! Now picture that your boss walks in two weeks before the test and says that you can actually keep your job even if you fail and there is no raise. Are you going to head back to class?

What I hope this example shows you is that while teaching techniques are important, at the end of the day it will be motivation that will play the largest part in overall success.

Motivation Through Time

Another way to picture the importance motivation plays in learning is to think of learning from an evolutionary standpoint. The human brain works best when attending to a very narrow set of information. This leads to a constant quest for your brain to filter out and prioritize what to pay attention to and what can be skimmed or even ignored all together. This makes perfect sense when in the context of evolution because why would our brains waste valuable space and energy on information that might not be vitally needed later? From this we get the phenomenon where, for some reason, we are able to remember exactly what happened in that video we just watched shared from a friend on Facebook, but cannot remember what happened in the lecture we just attended an hour ago! But how does our brain decide what is important and what we can tune out? You guessed it---motivation! When you are motivated to remember, your brain starts to assign more importance to the information being provided. The more motivation in place, the more importance your brain places on currently presented information. The good news is that we can harness this hardwired tendency to our advantage because motivation can be modified.

When I first started writing this book, I just had the pleasure of reading the book Autism Breakthrough that chronicles the amazing claim of recovery from Autism that may be possible using the Son-Rise method. While I certainly disagree with some author’s over generalizations of ABA (specifically his views that augmentative communication is a type of crutch that will degrade one’s chances of learning how to speak) the one main concept that I agree with from both a clinical and experience standpoint is that of motivating individuals to learn as opposed to rewarding individuals for learning. The key difference between these two seemingly similar concepts is that when we motivate an individual, we do it BEFORE they attempt to communicate as opposed to times when we reward an individual which occurs AFTER they communicate. Rewarding communication is also important, of course, but I would argue that it is LESS important that motivating an individual to communicate.

The concept of building one’s motivation to learn is not new to the field of ABA or the field of education as a whole. Numerous studies, including fundamental work by the founders of Pivotal Response Training (PRT) at UC Santa Barbara, has shown that building on one’s motivation to learn actually works to increase overall learning across a wide variety of other domains even outside of a specific therapy environment. In fact, most clinicians across multiple disciplines would agree that the more instruction is linked to an individual’s motivations the more likely the individual is to learn.

How Do You Motivate?

Now that I have hopefully sold you on the importance of motivation in helping to give your loved one a voice, let’s discuss how to actually go about building the motivation to communicate. Often, clinicians will ask parents what does your loved one like? and then simply take that at face value and begin training the learner to ask for those items.

Common answers to this question might be Goldfish crackers, the iPad or jumping on the trampoline. Once the clinician gets these answers most of the time these are the only reinforcers used for the ENTIRE duration of therapy. Over time even the value of items or activities that a learner was highly motivated to use will fade as they are used over and over again.

I disagree with this approach. Imagine motivation as a foundation for a new building. The fastest way to build the building would be to lay a small and thin foundation and then start to build. However, using this method the building can only be built to a certain height because the thin foundation can only support a small structure. Adding to this limitation is the fact that once you start to build it is hard to then GO BACK and work on that hastily-laid foundation. On the other hand, the builder could take more time in the BEGINNING and lay a thick and broad foundation before ever attempting to start raising the structure. And then when he thinks that the foundation is solid and thick enough, he could add even more to it just for good measure to make sure that it is thick enough. Once he finishes this work, instead of then starting to build, he adds just a bit more just to be safe and then he starts. In this second example, it takes a bit longer to get to the final product. However, at this point that building can be built as high as possible without limits. In this example that foundation is our learner’s motivation which can, despite popular opinion, actually be systematically increased over time using the following approach.

First, we need a deep investigation into your loved one’s current preferences and motivations. The way that we gain this deeper understanding of your loved one’s current preferences is to answer the question: What does your loved one like about what they like? The only way to be able to do this is to apply a structured plan on how you can investigate your loved one’s preferences on this deeper level. This systematic process is described at length in Chapter 6: Fact-Finding along with helpful templates that have been created to help you track your progress. What follows is a general example of how to systematically build your loved one’s motivation to help drive home the importance of this concept.

For example, let’s say that your loved one loves her iPad. The first step to gaining a deeper understanding of your loved one’s motivation attached to the iPad would be to ask what does your loved one play with on the iPad? Maybe your loved one enjoys watching Disney videos and using an app on the iPad that has animal sounds. That might be where another clinician would stop, but let’s try to go deeper and say what does your loved one like ABOUT the Disney videos? The way to find this out is to write down the videos, or individual parts of each video, that your loved one prefers and start to look for patterns. The best way to start to see these patterns is to engage in the activity with your loved one and take notes as your do so. In this case that would mean getting the popcorn out and watching the Disney videos with your loved one.

As you do, ask yourself, do most of the videos have animals as the main character? Do the parts that your loved one prefers always have action in them and a song in the background? Once these questions are answered, we can look for possible other videos, TV shows, or other stimuli that fit a similar profile to the patterns that you have observed at this stage. Once you start to expose your loved one to these similar items or activities they are more likely to enjoy them as well. This also creates a compounding effect because one new activity might lead to a whole new area of motivation that might connect to another area of motivation and so on. I think you can see that as this work starts to pay off, a learner’s motivation can grow much more broad and dense in a rapid amount of time.

To further extend our example and demonstrate this strategy, let’s just imagine your loved one’s favorite movie right now is Disney’s Aladdin, and their favorite part is a great action scene in the movie with a song in the background. Now also imagine that your loved one has not yet seen The Lion King and the closing action scene with the song in the background. The first time that you expose your loved one to this scene, they might fall out of their chair because they seem to really like Disney animated action scenes! That’s where true learning can occur because now your loved one wants to see that video again and you have the key for them to be able to do that–using their voice!

In a best case scenario you want your loved one so motivated that they are vigorously looking for the most efficient way to get what they want. This is a moment that we will refer to in this book as a golden moment. Another way to conceptualize a golden moment is when your loved one thinks, I really want ________. What is the best way to get it?

Right now, your loved one might decide that pulling you over to the item, or maybe screaming or having a tantrum seems the best way to get what they want. That is exactly where our instruction will be targeted so that your loved one can find their voice and no longer need to use those inefficient and frustrating ways to communicate.

More Golden Moments Means More Communication

One of the most important concepts in this book is the simple rule that MORE GOLDEN MOMENTS=MORE COMMUNICATION. And the only way that we can actively create more golden moments is to actively increase your loved one’s overall motivation.

One challenge that can sometimes occur when trying to find new items or activities that will build your loved one’s motivation to communicate is that right now their interests may seem limited. Maybe your loved one only prefers to align his Legos in the same pattern over and over in his bedroom. When this is the case, it can be hard to see where to go from that point to build motivation. However, the step for this learner would be the same as described above. We would want to ask, What does he like ABOUT arranging his Legos? And really the only way to truly do that again is going to be for the teacher to actually engage in the activity either with or alongside the learner. In this case, the teacher would sit down next to this learner and also start to arrange the Legos in his same order. When the teacher does this it is easier to start to see what the learner may enjoy most about this particular activity. Maybe it’s the sameness and orderly fashion that the learner likes to control. Or maybe it’s the way that the carpet looks when the Legos are in that certain pattern. Either way, this gives the teacher the chance to try out other activities that might give the learner the same satisfaction that they enjoy with these Legos at the moment. If successful, the teacher not only creates more golden moments for teaching, but the learner’s world also grows larger one activity at a time. Please visit our website (www.givemeavoice.net) in order to download some useful resources to help make the process of answering the What does your loved one like about what they like? as easy as possible.

Another challenge you may encounter involves the fact that your loved one’s interests might be seem strange to others and even you. Watching the same part of Aladdin over and over or spending your entire day arranging your Legos in the same pattern in your bedroom may seem strange to most individuals. When this occurs, most clinicians and parents will look to extinguish or severely limit the learner’s ability to engage in these activities labeling them as maladaptive or not age appropriate. While at first glance this seems to be a logical solution, it leads to an erosion of motivation and therefore less golden moments over time. In addition, it also robs the teacher or parent of the opportunity to engage in these activities in order to find clues about what really drives and motivates their learner. This also creates a compounding effect but in the opposite direction. As caregivers limit each motivating activity, the chance of finding further areas of motivation diminish greatly.

While I know that it seems like a leap of faith, my strongest recommendation is to celebrate your loved one’s interests no matter how strange they may seem to others. I know that this is easier said than done but the more that you can start to celebrate the video-watching and Lego-organizing, the more connected you will be, not only to your loved one’s motivation but to them as a person. Someone’s motivation has a great deal to do with who they are as an individual.

In Life, Animated, a book that documents the inspirational story of one family, the author, a dad, describes that his son was obsessed with Disney movies from a very young age. He would watch them over and over again if allowed focusing on certain scenes of each video. The family was told by many professionals that this was not an age-appropriate behavior and that the family should limit their son’s Disney video time. The family complied, of course, and their son did not speak and began to withdraw further and further from them. Then, the family decided to reserve course and start to celebrate their son’s love of Disney. They started to have Disney movie nights with their son. The whole family would watch and then act out scenes from the movies. This created a connection between the family and gave their son an increased sense of belonging as his love of Disney was finally allowed into the fabric of his family.

Then, an amazing breakthrough occurred. As the family was sitting one day their son, who until then had never spoke, came up to his mother and started to say juicervose, juicervose over and over again. The family thought he might want juice so they got him some but he continued to say, juicervose, juicervose. How this must have strained the family as they tried to decipher what their loved one was trying to say for the first time! Of course, as it is in my household as well, it was Mom who was finally able to translate that their son was trying to say Just your voice which is what Ursela says in The Little Mermaid! Just like all children, this boy’s first word represented something that was near and dear to him…Disney! His parents then went on to harness this motivation for Disney in order to communicate with their son and eventually unlock his voice in an amazing and inspired way.

As you can see, if you are able to also harness a current preference, even if it seems to be strange at first glance, then the door to their motivation will open, allowing a compounding effect of motivation in a positive direction. Learning and progress will follow this road as it is paved. If this door is closed, I would certainly be worried that the chance of being able to give your loved one their voice would be greatly limited or even not possible in the long run.

I cannot stress enough the importance of this concept of building one’s motivation in an active fashion through answering the question What do they like about what they like? As you continue through this book you will find, in my humble opinion, very sound and sophisticated teaching strategies that will educate you on HOW to teach your loved to find their voice. But at the end of the day, I am certain that it will be your loved one’s motivation that wins the day. Think of motivation as the wind that pushes a sailboat across the sea. The more motivation the faster that boat can speed toward its target and the same will be true for helping your loved one find their voice.

CHAPTER 3: HOW TO USE AUGMENTATIVE COMMUNICATION AS A BRIDGE TOWARD VERBAL SPEECH

As stated before, I want to help you use augmentative communication as a bridge toward helping your loved one find their verbal voice. Each teaching step provided in this book will contain a section that focuses on promoting the use of verbal language. To help the reader there will be a Promotes Speaking next to these steps in each Quick Reference Guide to help the reader know where this part of the process is taking place at all phases of instruction. The goal of this chapter is to provide the reader with a general idea of how to actually use augmentative communication to promote verbal language and provide the idea behind this concept.

The Importance of Verbal Language

Before we start, though, it is important to address why it is so important to focus on the development of verbal language. First, verbal language is certainly the most efficient and effective way for all humans to communicate. This is why we all choose to communicate through spoken language if we are indeed given that choice and not through sign language, picture exchange or using a device. All humans therefore will have the internal desire to realize that verbal language will help them get access to what they desire in the quickest and most efficient way possible. Unfortunately, sometimes what can come easy for some is excruciatingly difficult for others. The reasons for these differences in development are yet unclear but regardless the reasoning, I hope to help you help your loved one crack the code and find their verbal voice.

The main concept of human behavior that we will be exploiting here is the Matching Law. What the Matching Law states is that humans will naturally gravitate toward places, environments and behaviors that typically gain them the highest rates of reinforcement. The classic example of the Matching Law involves picturing two parents with the mother being the disciplinarian and the father being the pushover. Over time, their young daughter has learned that if she asks her mom first for a cookie before dinner, her mom is very likely to say no because of course, the rule is that cookies are not allowed before dinner. However, she has noticed that if she instead approaches her dad first and asks him, that most of the time he will grant permission to have a cookie (typically followed by the disclaimer don’t tell your mom). I think I can see a few readers laughing as that scenario may be hitting somewhat close to home! As is the case throughout this text, the key to utilizing this concept lies in a perfect blend between science and common sense.

Together, science and common sense can help you set up an environment around your loved one that encourages the use of verbal language, but does not require it. The best way to create this environment for your loved one is to adopt a strategy where communication of any kind (picture exchange, using their device, etc.) will gain your loved one access to what they are seeking, but if your loved one is able to use verbal speech then they will get MORE reinforcement as a result. In other words, their life will be OK if they communicate through augmentative communication, but it will be GREAT if they use verbal speech. This allows your loved one’s voice to be heard while always having the motivation in place to push to use verbal language if they are able to do so.

When we talk about reinforcement, I mean the reward your loved one receives as a result of communicating. This can be something tangible, such as a glass of milk, but also other forms, such as social praise, access to seeing someone they enjoy, letting someone know that they would like to do something else, etc. All of this will fall into a broad category of reinforcement because all of these things are something that at some point your loved one will want and by showing your loved one that speaking will be the most efficient and effective way to give them the highest amount of reinforcement possible, you will be doing everything that you can to promote your loved one’s use of verbal language.

Enhancing Reinforcement

Consider a car salesman who earns a base salary but also a commission for each car that he sells. The base salary in this case would be your loved one getting access to what they are asking for by using any form of communication. As long as the car salesman shows up to work on time and tries to sell cars to incoming customers, he will get his base salary. However, he also knows he will earn much more for every car he actually sells. In our case, the sale of a car would be the use of verbal speech. Each time the car salesman sells a car they get another burst of reinforcement that will make them more and more MOTIVATED to sell cars in the future. On the other hand, if they have a few bad days, they still earn the base salary that will get them through.

Using our same car salesman example, there are other variables in play within that scenario worth examining. The first would be to think about what