Sensational Learning with Penguin

This post is about some important aspects of learning to use high tech AAC (such as an AAC app on iPad, or similar). I’m ‘just’ a mum, not a speech and language therapist, but we’ve been on a journey of learning AAC for a good few years now, and I have learnt a lot along the way, which I want to share with others! I also like to include links to information and resources from professionals in this field, both to solidify what I’m saying, and to give you useful sources for expanding your own growing knowledge.

My main wish is to make more knowledge about AAC readily available for other parents, in particular. It can be hard to find good professional help on this journey, and if that is the case for you, I want you to know that it’s possible to do this without professional support. A professional is a human being with a lot of knowledge in a specific area. You are a human being and you can acquire the knowledge! If you *can* get professional support, please do! It can be fantastic and enormously helpful. But even then, it is good to keep yourself informed, as not all professionals have the time to keep their knowledge up to date, and if AAC is not their main area of interest, their knowledge could sometimes be quite rudimentary.

Background (please feel free to skip past this and go straight to the 5 points listed below)

Our son (‘Penguin’) was born in 2007. He was diagnosed as autistic with learning disability when he was about 4 (a somewhat delayed diagnosis due to us moving to a new area etc) and has been pretty much nonverbal (a.k.a. non-speaking) all his life. When I first became aware of the existence of communication apps, not long after his diagnosis, that technology was still quite new and relatively expensive. I asked our son’s ‘autism team’ if they might be able to prescribe an iPad and AAC app for him, but they said it wasn’t an option. We were living in Sweden at the time, and there weren’t many apps available in Swedish, which might have been part of the issue at the time, possibly. A couple of years later however, we were told by our team that it was now an available option, and we were happy to receive an iPad Mini with an AAC app (in Swedish).

However, the guidance we received at the time was very limited. We were given an introduction, but that focused on how the app worked, rather than how to implement using it. We were shown how to add a new word, change a symbol etc. Then we were pretty much sent on our way… There was a speech therapist on the team, but she was (like most people then) very new to AAC, so the advice we got was just to use it when communicating with our son, so that he can see how it is used. That was good advice, but we could really have done with more guidance. On the other hand, there wasn’t yet as much known back then about how to best implement AAC, so some of the things I’ve learnt along the way would most likely not have been taught to us back then, even if we had been given more professional support.

Anyway, we learn and grow as we go, and we do what we can with the knowledge we have. And with that said, here is my list of 5 things I wish I’d known from the start:

1. MODEL MODEL MODEL – WITHOUT EXPECTATION!

When our speech therapist told us to use our son’s AAC when talking to him, so that he could see how it’s used, it was actually great advice. But I have to admit that I didn’t fully ‘get it’ straight away… I think it’s in part because, as parents of children who do not speak (nor use sign language or other alternative communication), we are so keen to find out what they want and need, and what they’re feeling like and why. So it’s very easy to fall into the trap of asking. “What do you want?”, “How do you feel?”, “Where does it hurt?”… That’s not modelling. Modelling is using the AAC device while we are talking, and using it to say some or all of the words we are using ourselves, as we speak.

The AAC company AssistiveWare have a great webpage about what modelling AAC is all about, and I especially recommend you to watch their video called ‘Modelling – Use AAC to teach AAC’ which you’ll find under the subheading ‘What is modelling’: https://www.assistiveware.com/learn-aac/start-modeling. Bookmark the page – or this post 😉 – so that you can go back whenever you need to refresh your knowledge and ideas about modelling!

Modelling without expectation means not pushing our child/AAC learner to use their AAC. You can comment on things that you think they might have wanted to say something about, for example, if they laugh at something they see (perhaps in a book or a video), you can say “that’s funny” and model those words, or just the word “funny” (as that’s the most important word in the context), so that they see how they *could* use their AAC to comment on something. Or if they are showing you by using body language that they would like more of something, you could say “oh I think you’re telling me you want some MORE, don’t you?”, and press “more” on the AAC as you say it.

Please do NOT tell them to (nor physically make them) ‘tell you on their device’ or ‘use their words’ if they are telling you something in another way, such as using body language, for example. If they go to the fridge and reach for juice, don’t make them press “juice” or “I want juice” on their AAC before giving them the juice. They’ve already told you by their actions and you have understood what they want, so respect and honour their communication and give them the juice. If you’re quick you could model “want juice” while saying “oh I see you WANT JUICE” as you help them get the juice out of the fridge. Or you could focus on helping them to a glass of juice first, and then comment “You really LIKE JUICE, don’t you”, while modelling “like juice”.

Like many autistic individuals, our son has a degree of demand avoidance, which means that he very easily gets stressed or anxious when told to do something. Quite often it will make him panic and act out, while other times it makes him freeze with anxiety. Either way, it’s not a positive reaction. In hindsight I can see how I used to try making him use his AAC, and how pushing him in that way actually caused an adverse reaction, which meant he didn’t even want the app opened, because he knew it came with demands. Ouch… So I’ve learnt the hard way that modelling without expectation is really important! Here’s a super helpful video, by The AAC Coach, which also includes some practical examples: Modeling Without Expectation

2. MOTOR PLANNING FTW!

‘Motor planning’ is all about the processes of learning and remembering the actions needed to perform all kinds of tasks, so that we can eventually perform them quickly and without stopping to think about each step. Regarding AAC, motor planning is important to keep in mind when it comes to finding the words/’buttons’!

Why is this? Well, think about when you use your smartphone or other touchscreen device: If someone would rearrange all your apps, they would become more difficult for you to find, wouldn’t they? That’s because your fingers have ‘memorised’ where each app is, and you’re not really looking at the symbols, as you can rely on your motor memory. Same thing goes for things like rearranging your kitchen cupboards – you will keep going to where the bowls used to be before, then have to stop and think where they have gone now, right? The same thing happens when words/’buttons’ are moved around on an AAC device, and that can understandably be super frustrating for your AAC learner!

Again, this is something I’ve made big mistakes with before. With the first AAC app we got, I kept thinking of new things we needed to add, and then how it (in my mind at least) would make more sense to organise the menus differently, or group certain words together. To be honest, I still have to keep reminding myself that it’s more important to respect motor planning than to have certain words next to each other.

Motor planning should be kept in mind already when you set up an AAC device/app and decide what size grid set to begin with, as Rachel Madel (SLP from the US with a passion for AAC) explains about in this short video: https://www.facebook.com/rachelmadelslp/videos/168271152152367/

3. GIVE ‘EM ALL THE WORDS – AND ALL THE LETTERS TOO!

Imagine being told that you need to communicate better with people around you, while at the same time only being given 12 words to use for that communication… That was, I’m ashamed to say, what happened to our son at one stage. I had been asking our team about other AAC options than PECS, and they provided us with a mid-tech device which had 12 different buttons to program an press (3 of which were to always remain the same, while the other 9 could be programmed as different sets, meaning there were more than 12 words in total but never more than 12 at any one time). Unsurprisingly, that device did very little for our son’s communications skills, and actually I feel that the limitations it came with probably made him *less* interested in trying to communicate with us.

So, give access to a lot of language! We want them to be able to say whatever *they* want to, and we cannot possibly know all that they might wish to express. So access to a rich vocabulary (hundreds of words, if not more!) is really important.

Also, as the long term goal is to be able to say absolutely anything and everything, even using words that have not (yet) been programmed into the person’s AAC, we should also be working on literacy. And to support this, make sure that your AAC system has an inbuilt keyboard, and incorporate that into your modelling too. For well-researched practical guidance on how to work on literacy, I strongly recommend the book ‘Comprehensive Literacy For All‘, and the wonderful literacy series of the LOMAH podcast which is structured around the methods and strategies explained in that book. There is also a private book study fb group you may wish to join, as well as this great Literacy for ALL website run by the hugely experienced and knowledgeable speech pathologist Jane Farrall.

4. CORE AND FRINGE – BOTH ARE IMPORTANT!

Core vocabulary is a term for commonly used words that make up a very large percentage of all our daily communication. They are words such as ‘go’, ‘like’, ‘see’, ‘more’, ‘get’ etc, which can be used in many different situations and contexts. Fringe vocabulary on the other hand are all the more subject specific words we use. This post published on the super helpful PrAACtical AAC website explains about why both core and fringe vocabulary are of importance and provides very useful advice on how to choose what fringe words to make available: Fringe Vocabulary: How to Select and Not Neglect.

At the beginning of our AAC journey, I never heard about fringe and core. A couple of years into it, I started coming across information about the importance of core words, and the general recommendation then seemed to be to focus on core first, above fringe vocabulary. However, fringe words are often the more motivating ones for many AAC learners (and for most of us probably, to be fair), so the consensus now seems to be that fringe and core are BOTH of great importance. So a good selection of core words should be easily available on a person’s AAC device (and most robust AAC apps nowadays are set up with this in mind), but it should also be easy to reach the fringe words that are of relevance to the AAC user.

Two things we’ve learnt from experience along the way, is that focusing too much on fringe vocabulary for things you assume that your AAC user will wish to ask for, such as favourite food and drinks, means you risk turn the AAC device into a ‘snacks and drinks dispenser’. Whereas focusing too firmly on core words and not providing enough relevant fringe vocabulary comes with a risk of making AAC uninteresting.

5. CONSIDER SCRIPTS & ECHOLALIA!

This might not seem relevant to you at first glance, if your AAC learner has no spoken language, but please keep reading! Most people are believed to be analytic language processors, meaning that they develop language word by word, first using single word utterances, then two word combinations, then three and so on. However, some children are ‘gestalt language processors’, and they tend to pick up phrases or strings of word combinations, rather than single words. This is also called ‘natural language acquisition’, and it’s something I’ve started learning about relatively recently.

How is this relevant to an AAC learner with no (or very little) intelligible speech? Well, the fact that a person isn’t speaking doesn’t mean they aren’t processing language internally. So it’s totally possible that a nonspeaking child (or adult) has phrases they use in their mind, but can’t express. And if so, they may well wish/need to have the option to communicate those phrases/’scripts’ on their AAC. And they might also be more inclined to use their AAC if it offers some complete phrases rather than only/mainly single words.

I suspect that our son is a ‘gestalt language processor’, rather than analytic. He has favourite parts of videos that he’ll play over and over, and if we imitate the phrases spoken in those clips he pays great attention. And if we speak part of such a ‘script’ he will try to fill in the next word himself. He does the same thing with some songs and nursery rhymes too. So now I’m trying to figure out how to best support him with this on his AAC… There isn’t a lot of professional advice as such, yet, but this video from Meaningful Speech is a good place to start for learning more.

If you too suspect that your learner is a ‘gestalt language processor’, I can strongly recommend the fb group Natural Language Acquisition Study Group. It’s led by Marge Blanc, who is an American SLP and who I believe it is fair to call the main authority on gestalt processing, as a lot of what we know so far is based on her work, research and writings.

Further Resources:

There are many great websites, blogs, social media accounts etc where you can keep on learning about AAC. I included a few of my favourites in this blog post last year: AAC – Basic facts and helpful resources

This is another great list of resources, put together by Mummy vs AAC: https://www.mummyvsaac.blog/resource-bank/

Thank you so much for reading! I hope you’ve found this information helpful – and if so, please feel free to share this post to spread the knowledge. If you have any thoughts, questions, additional advice or favourite resources you’d like to share with us, please do so in the comments below! Thank you x

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