Towards the beginning of this year, I wrote several posts on my Fumbling Thru Autism facebook page (https://www.facebook.com/pages/Fumbling-Thru-Autism/102482513246303) about hiring a Augmentative and Alternative Communication (AAC) consultant, purchasing a separate iPad, and programming the heck out of Proloquo2Go (https://itunes.apple.com/us/app/proloquo2go/id308368164). For those who are unfamiliar, the iPad app Proloquo2Go is basically an electronic way to generate expressive (spoken) language with a series of customizable visual choice boards via icons that speak when touched. As of August, we have put AAC and Proloquo2Go on hold and the purpose of this post is to explain why we came to that decision. There are many blog posts by others who tout that AAC does not interfere with spoken language development (http://aac.unl.edu/yaack/b2.html) and proponents will hint or outright say that deciding not to use AAC is denying any child with expressive language delay a voice. But I have decided that things can be much more complicated than they seem, and the decision of appropriateness of AAC for a young child who has significant spoken language delay and autism depends on a many competing factors. I will start this post with Beth’s speech profile at the time we tried Proloquo2Go, detail some of our experiences while trying to use Proloquo2Go, and then give an update on Beth’s speech.
Beth’s Language Profile
Beth’s last detailed speech evaluation was a few months before we tried Proloquo2Go, in October 2012 at 4.5 years old. The results showed a 2-year-old receptive (ability to understand what others are saying) and 2-year-old expressive (ability to speak) language level. Beth’s articulation was assessed as appropriate for her expressive language level.
I was uncertain of the accuracy of the receptive language speech assessment, and I wondered if Beth receptively understood more than she could show during the test. In addition, I was inspired by all the stories of kids in news reports and blog posts who could not talk or could not say complex things with spoken words, but could use a device to reveal complex inner thoughts. So in an expensive experiment, my husband and I decided to try Proloquo2Go on the iPad.
This is the main menu for Proloquo2Go (I tried many formats, this is how I left it when we stopped using the device). The icons that are outlined in thick black and look like folders have sub-menus. Some icons/folders were for requesting things that she could say verbally but sometimes had trouble saying (like food and drink), some were for things that I thought she might know receptively, but could not express (like expressing feelings, yes/no), and some were for teaching new expressive language (like question words and school work).
Despite tons of modeling, encouragement, and sometimes even a quick hand over hand to expand her language, when Beth picked up the device she went to the “want” folder most of the time. So the main screen was primarily used by me for modeling new language and I made sure anything she requested like food, drink, and favorite items were in the “want” folder, even if there was a duplicate way to request the item from the main screen.
Confused just looking at the screens above? You should be! Programming just enough language to let a child be independent and yet not hold her back form advancing her language was a monumental task, especially since she already had a significant amount of spoken language. I played around a lot with removing words, making icons bigger, and changing layouts so that Beth could visually scan and make the choices easier. I didn’t want it to cut into other things we were doing, so I was up late at night programming the thing all the time. I wanted to make sure I was giving the device the best chance possible. So if you take this route with a program like Proloquo, know that it will be a full-time effort at first and it will be very time consuming. But there are other options out there, such as SpeakForYourself (http://www.speakforyourself.org/), which I understand is easier to use.
At the time we started using Proloquo, high on our communication frustration list were the following:
- Requesting items, foods, and drinks (she requested things very inconsistently at the time).
- Telling me which song she wanted in the car, because she just kept saying “Jack” over and over. Jack was in reference to a Jack Johnson album we played many times, so she was stuck saying “Jack” but it seemed she wanted other songs and would scream in frustration.
- Saying people’s names during greetings.
- Answering yes or no when we asked her questions.
I figured if we could make progress in the above areas, which we had been working on for a long time verbally, then I would be sold on Proloquo and AAC for Beth.
Test Case Results
- Requesting Items: When she went to the “want” folder, she went to her favorite items. So, what Poloquo2Go taught me was that she was basically thinking about her mouthing items (floss, edible toothpaste, etc.) all the time! I sort of knew that, but I didn’t know the extent of it. After playing around with her favorites, she eventually settled of pressing certain buttons over and over. Beth is a huge sound stimmer and Proloquo2Go was no exception. I finally came to the conclusion that she was gravitating to her favorites, then stimming off the sound. If I would move her onto the food folder, she would do the same thing, first play around, then settle on a few favorites, then stim off the sound. Proloquo2Go has an option to have a wait time and disable the sound for a time period after pressing the icon, but she got confused and frustrated after I added the wait and she would walk away. I thought maybe the favorite things were just too powerful, so I moved her onto the other test cases.
- Song Requests: The first challenge was to get images that represented songs on some mixed CDs that we had in the car. Fortunately there were many pictures available within the program so I didn’t have to pull stuff off of Google. Examples of song icons: the sun icon represented “Sally Go Around the Sun” and the elephants depicted “Elephants Have Wrinkles” (see screen shot below). I really thought the song request menu was working for a while. She did like to listen to the same song over and over. But then she started stimming on the sound again by pressing certain buttons over and over. When I put the wait time on the sound, she would explore the buttons more, but would always come back to her favorite stim buttons. Was she stimming? Was she requesting the same song over and over? Now we have worked on this issues without the device with success, I can say looking back that it was both. The combination of Beth’s impulsive button pushing (she has impulse control issues with almost anything, and she will act before thinking) and stimming meant that spoken language, while harder for her, had a benefit in that it slowed her down and she had to stop to consider choices and what she wanted to say first.
- Saying People’s Names During Greetings: The “people” folder I used for teaching the names of family and friends consisted of pictures of everyone we know. To make a long story short, what I learned from Proloquo2Go was that kiddo cannot put names to faces. I noticed she really avoids looking at and studying people in real life, and she cannot name people unless she ties that person to a location or she knows them very, very well. I have even made a huge poster of friends that has been hanging on our kitchen wall for months and we discuss the names and faces and their features and she still cannot do it. I strongly suspect face blindness at this point. So, the problem was not that she couldn’t say people’s names, it was that she had a problem with processing faces and then putting names to faces.
- Answering “Yes” and “No”: We had tried forever to get Beth to answer yes or no to questions consistently by various methods. I thought this was a slam dunk for Proloquo2Go and that she most likely understood how to answer receptively, but was just having trouble speaking the answers. To make another long story short, even yes and no resulted in impulsive button pushing and stimming, and it turns out she really didn’t understand the interaction and what it meant to answer yes or no to a question. We (me, her dad, and speech therapist) did an intense verbal effort and what seemed to worked best was shaking our heads back and forth to prompt her to say “no” when we were fairly sure she did not want something and nodding our heads up and down to prompt her to say “yes” when we were fairly sure she wanted something. I can say now that she fully understands “yes” and “no” answers and I have Proloquo2Go to thank for making me realize it was a true understanding issue and not just an expressive language issue.
Reflecting on Proloquo2Go
Proloquo2Go did not reveal a huge gap between expressive and receptive language like I had hoped. But then again the sound stimming and the impulsivity with pressing buttons impeded our efforts to use the device effectively. Also, she was recently diagnosed with impaired visual scanning, which feeds into her tendency to not look and examine items before she presses buttons. The upshot is that since Beth has a significant amount of expressive language and her articulation is not bad, the motivation for continuing to try to figure out ways around the stimming and impulsivity is just not there for me. Even though it did not work out for us right now, I can see a point in the future where her receptive language outweighs her expressive language ability and typing out thoughts may be easier for her. So, we are working on spelling, writing, and organizing spelling letter tiles right now, with an eye on typing in the future.
Progress is a Slow Slog
Beth has made a lot of progress in the last 4 months after we discontinued Proloquo2Go. A new speech evaluation is pending, but I would say Beth, who is 5 years and 9 months old, is somewhere between a 3 and 4-year-old expressive level. I would say her receptive language understanding is definitely at a higher level than her expressive language now. Now that I understand Beth better, I would say that she has problems getting stuck on phrases and linking certain words to others, and impulsively answers without considering the question or her options carefully. Giving her lists of choices and mixing up the choices, and telling her to slow down and think through the options, is helping her stop and consider choices before speaking the answer. Also, being extremely concrete about what words mean, what I am asking, why she should say certain things during social situations is effective for her now that she has more receptive language. At this point, Beth totally gets answering yes and no (and even says no (insert non-preferred item here)), her requests for food, drink, and favorite items are rapid fire, she can request many different songs in the car, and she is able to string words together a little easier. We are making progress. It is just a slow, slow slog.