A frequent conversation in AAC communities for people who use symbols-based apps and their caregivers is: what grid size should I use? Is it okay to change grid size/layout later? Well, in the last week or two I changed my symbols-based app around significantly, and want to talk about why I did so and what it’s been like to transition.

First, some basics: I’ve been using Proloquo2Go for a couple of years now. This highly customizable app (for IOS only, unfortunately) features buttons with picture symbols for full words as well as a QWERTY typing view that can be switched to as needed. Due to my sensory profile (strong fine motor skills, somewhat easily overwhelmed visual processing, and difficult hand eye coordination) I’d come to use Proloquo2Go’s symbols view largely based on motor plan rather than by visually scanning for the words I wanted – that is, I had built a muscle memory of where many words were located on each screen so that my hand would automatically move to the right area, similar to how I type on QWERTY. I had this decently down for common words, albeit with plenty of near-misses on the buttons I was aiming for due to the hand-eye coordination problem, and of course was still relying on visually scanning (which takes me longer) for less frequently used words (“fringe vocabulary”).

So if having built up this muscle memory was how I navigated the app as well as I did, why would I want to switch grid size/layout?

I had toyed with the idea of changing the layout of many of my fringe pages for months, because I’d long since noticed that I almost always habitually went back to the “home” screen for core vocab rather than checking whether any given fringe folder’s template included the core word I was looking for. This meant that the templates used in most core folders were just taking up space, pushing lots of fringe words to the second layer of that folder – meaning it took an extra button press to reach those words. If I was going to automatically go back to the home screen to use core vocab anyway, why keep the same words in the fringe folders? But on the other hand, was it worth re-learning where my favorite fringe words sat on the screen once core words were removed?

I’d also noticed that the default templates (and honestly I’m not sure why this seems like a good idea to anybody) both vary which words are available on different kinds of pages and occasionally alter the location of core words compared to the home screen. This means that I couldn’t rely on motor planning to inform me where to find core words when on one of the fringe pages, which is probably what built my habit of returning to home each time for core words in the first place. While using fringe page templates like this might speed up communication for many people because their ability to visually scan for core words on the page they’re already on prevents them from needing to tap back to home, it was just slowing me down by pushing fringe words “further away” (more button presses) from the home screen. But learning how to edit templates somehow seemed like a daunting task, and I wasn’t sure if it was worth it.

The event that prompted me to go ahead and change all this stuff was that I’d offered to build a core board for a Facebook acquaintance to print out and introduce to their little one while they were waiting for the usual April sale on the app. I encouraged them, as is the general recommendation, to request whatever grid size they thought was the most buttons their kiddo was going to be able to handle given the prospective screen size and any visual impairments or other constraints. They chose 8×14, one of the standard options. I remembered considering this grid size when I was initially setting up my app, but at the time I felt visually overwhelmed trying to contemplate navigating anything bigger than 7×11 on my Ipad Mini, so I had set up my own user profile as 7×11 and used it ever since. I created a quick new user profile for 8×14 in order to create this other family’s core board, and after editing for a few minutes I realized… this is not overwhelming to me. 

I think something about having a couple years to get used to symbols-based/grid-based AAC – and this app specifically – really made a difference in how visually overwhelming a bigger grid size felt. So I quickly did the calculations: 35 more buttons per page? Even 35 more buttons just on the home screen would probably speed up communication. But I just wasn’t sure if it was a good idea to try to get used to a new layout.

And that’s when I remembered the other changes I’d been thinking of making – removing the templates from many fringe pages; editing the standard templates. If I was going to make changes, I really ought to make changes, right? I knew a major reason for the common recommendation of starting with as big a grid size as possible is that changing the layout of what-word-is-where later can be extremely difficult for an AAC user to adjust to, especially those of us that do rely on a motor plan more than visual scanning. Would making these changes be like learning AAC from scratch?

I took a few days’ worth of deep breaths and dived in, figuring, 1) I enjoy fiddling with communication boards no matter what, so even hours of rearranging and editing would probably just register as “ooh fun!”, and 2) if I put in a lot of effort but it ended up impossible to get used to, it’s not like my old user profile would have disappeared. (Kudos to Assistiveware for letting me design multiple user profiles on one app/device!) I followed through on all the changes I was thinking might speed up my communication – bigger grid size, removing templates from many fringe pages, and editing the standard templates to better match the home screen and each other. I also did a lot more color coding and subtle customization like varied outline widths to make certain buttons stand out to me more.

The results? Almost none of my fringe folders necessitate second layers – the words (or subfolders) I need are all on the first screen of each. For my People, Places, and Verbs folders, I pulled my most commonly used words from each of their subfolders out onto the main page. (For example, now I can find the words “friend” and “doctor” under just Home>People rather than Home>People>Friends and Home>People>Healthcare.) My Home screen fits not only more words on it now but more folders, so I don’t have to navigate to the second layer of Home as frequently either. Let’s look at how this affects sentence construction: on my new layout, the sentence “yesterday I had coffee with my friends [O] and [Z], we practiced more sign language and talked about our plans for next week” requires 49 button presses (average 2.1 per word), but on my old layout, it requires 58 (2.5 per word). If that sample is representative, it adds up! Writing 2000 words of my novel (I like composing on my symbols app and then copy and pasting into Google Docs) will take 4200 button presses on my new layout instead of 5000. Additionally, four of the necessary buttons for this example sentence have added color coding in the new layout due to being words I use frequently, which I expect will help me navigate to them (and buttons relative to them) more quickly. After editing templates, none of the core words from the home screen are located somewhere different (if present) in other folders, so I can more consistently rely on the new motor plan I’m building.

It is not without difficulty to switch to a new layout, and if someone has even more trouble with cognitive transitions than I do, it’s possible there’s no number of decreased button presses that would be worth the learning curve. But for me, this feels like a really positive change. I’ve been making a point to practice the new layout just like I made a point to practice the app when I very first got it. Reading aloud to myself, answering practice prompts in Facebook groups for AAC users, using Proloquo2Go to compose texts and Tweets, and writing other documents using symbols are all helping orient me to the new layout. I kept as many things in the same relative place as possible given the task at hand – like, the home screen doesn’t look like it went through a catastrophic reorganization compared to what it was before, it just has more than it had before. More personalized color coding than is the app’s default seems to be slightly improving my ability to visually scan for fringe words’ new locations. Wonderfully, this grid size even leaves me room to grow – many fringe folders now have one or two dozen blank spaces I can add vocab to as I find myself without any given word mid-thought, rather than knowing any additions would just be buried on the second layer.

Proloquo2Go’s default setup does work very efficiently for some people, but its customizability is its true strength – and the fact that the app allows for me to easily make all these changes is a major reason I am loyal to it. What I’d say to anyone considering changing their own grid size or app layout is: talk to other people who have done it (this Facebook group is a good resource), and make lists of what you expect will be the pros and cons… but, when in doubt? If inefficiencies or possible changes have been nagging you for awhile, then I’d say just go for it. Make sure you have a backup of your old layout safely tucked away, set aside plenty of time and energy for editing/customization and practice, and see what happens!

If you’re a professional or caregiver considering changing another person’s app – ask them directly what they think. Explain what you understand to be the pros and cons to be in language they understand, and phrase follow up questions in a way they are able to answer (for example multiple choice or yes/no if open-ended is more difficult for them). If they are excited about a reorganization, wait until you’ve basically finished tinkering with the new layout before introducing it to them, and ask them what they think/if they want any changes. After that, do your modeling on the new layout but make sure they have access to the old layout anytime they want to switch back to it – their ability to communicate in the moment should never be frustrated by trying to learn a new layout for the long-term.

Have you switched your AAC (symbols app, letterboard, whatever) to a new grid size or layout before? What was it like? Comment below!

I know I said I don’t really plan on posting poetry to this blog, but a dear friend asked me to write some, and the content is relevant – so, here you go!

people think i spoke for all those years
even correctly, for some of them.
so how can i explain
that it is only now i have a voice?
true, i eked out words here and there
that were right and true
paper, journals, signs, word processor, instant messenger, emails, texts…
i even spent days in silence –
perhaps a whiteboard note or two,
scratch paper for the barista (soy latte, 16 ounces) –
but i didn’t understand.
how can i tell you
whose brain is connected to your mouth
that my fingers are more sure than my lips?
and that now that i know myself
my words are strengthened, more confident, more proud?
to me, quieter than i wanted for all those years,
being able to press play feels like a privilege.
but what i wish for everyone
growing up unusual
is a human right:
words any way you want them
all the ways you want them
no explanation necessary
at all.
my words my ways
is a promise to myself
and a hope for everyone else atypical
in this world that doesn’t listen.
may we all have loud hands.

[The final line is a deliberate reference to ASAN’s “Loud Hands” anthology, please check it out.]

You can read Part 1 of this post here, focusing on assessing autistic people for AAC supports. This second part gives tips on interacting with those of us who already use AAC and helping advocate with us for communication rights.

Whatever AAC supports you and the autistic person have selected, it’s your job to model as constantly and thoroughly as you can! If the only input nonspeaking autistics are getting from people around us is speech, at best we are going to develop self esteem issues from the implicit message that our communication isn’t normal, or at worst we will never learn to use our AAC supports at all. Please teach our caregivers how to use our AAC supports so we are getting consistent input in a useful modality throughout the day and across every setting.

Along with modeling, please provide us with as much vocabulary as possible as early as possible! The AAC field has historically often fixated on teaching requesting, but every autistic person has the right to all communicative functions. This includes refusal! That is actually a really important thing to introduce along with other vocabulary for self-advocacy; being able to say no is important for our safety and self-determination. As another example, if you think we are not capable of commenting on preferences or sharing opinions, and thus don’t give us the vocabulary, you have made us automatically and ongoingly not capable of commenting on preferences or sharing opinions! And please make sure from the outset autistic communicators have vocabulary for talking about our special interests and favorite objects; we are more likely to want to learn our AAC method if we can use it for conversations that excite us.

As early or often as possible try to teach us how to customize our devices and add vocabulary for ourselves. Don’t see yourselves or our caregivers as the sole moderators of our access to communication. And don’t overstep your bounds in assessing how we use our devices. Many programs have a history or tracking feature that can help you analyze what words we’re using, but looking at this without our consent is a privacy violation.

Some other thoughts on working with AAC users… Never take away our device (or light tech supports)! They should always be within reach. I have had my device taken away and it is such a helpless feeling. Even if we are using our device for what seems to you to be non-communicative, for example echolalia or vocal stimming, and even if it’s getting really really annoying, we still deserve access. You probably sometimes sing along to the radio, which is essentially socially acceptable echolalia/vocal stimming, but no one tapes your mouth shut. Give us the same autonomy. The one exception to this is if the needed objects might get damaged, for example in a swimming pool. If this is the case try to get our consent before just taking it away, and have a backup like a small laminated communication board or at least a system for answering yes and no questions while in that environment.

Ask each AAC user directly how we prefer to interact. Some of us want communication partners to be silent and patient while we type, other people would appreciate you trying to guess the ends of our sentences so that it is less work for us than having to spell everything out. We might like a device set to speak each letter or word as we type it or we might want to compose messages silently and play the whole thought at the end. Some of us want to keep our screens private and express ourselves with speech generation, other people would rather you read along as we type. No matter what an AAC user prefers along these lines, use your relative position of power as a professional to teach peers and caregivers how to interact with us respectfully. Make sure we are invited to our own IEP meetings and other services planning meetings so we can express our own goals for our communication, and make sure people talk directly to us rather than to our caregivers and assistants. I have had doctors ask my support person questions about me while I was sitting right there, it’s really patronizing.

Another thing to consider is helping us use our AAC system to connect to other people and places, not just face to face. We may want to make phone calls – can we use text relay for that, or put our devices on speakerphone? Can our devices access emails and social media so that we can copy and paste the sentences we write using symbols directly into other apps? This is important not just for our social lives but also for self advocacy. For example, we might want to call a hotline to discuss our rights in benefits programs. We deserve to contact our senators and representatives about policies that affect us, and most autistic adults have the right to vote even if we are under guardianship. Think about whether our AAC supports will give us access to these activities that are part of living a full life.

Okay, that’s the text of the presentation I delivered to future SLPs! As I give more presentations like this I will probably refine and add and cut and edit, so maybe someday I’ll update this post, but for now this is a good summary of what I’d say to professionals fairly new to AAC for autistic people. Please feel free to pass it along to anyone you think might be interested!

Are you an autistic who uses AAC? Please let me know below what else you would want to tell people at an intro level by commenting below.

Part One: Assessment

I gave a presentation about AAC in a Speech/Hearing Sciences class on autism last week, and I want to share the text with you as a sort of “Intro to AAC” geared mostly towards students and professionals relatively new to the subject. That said, there’s probably going to be good info in here for families too as well as some core advocacy concepts AAC users might be interested in. (Warning, if you’ve read my blog before you may see some duplication of ideas, the goal with this two-part post is just to get all the sort of 101 info from my presentation into a consolidated online resource.) This week I’ll post the portion about assessing autistic people for AAC supports, and then next week will be tips on working with AAC users and helping advocate with us for communication rights.

As for assessment, hopefully you have already heard the phrase “presume competence”. This is a key principle in the AAC field. Another phrase I like that gets at the same thing is, “an absence of evidence is not evidence of absence”. So just because you have a child or adult in front of you who hasn’t yet demonstrated an ability to communicate, that doesn’t mean the ability is not there – it might just mean that they haven’t been offered the right supports yet. Think back to the social model of disability, and until proven otherwise assume that an autistic person’s lack of communication is a fault in the environment rather than a fault in their brain. There is nothing inherently superior about speech compared to other communication methods, so there’s no reason you should hold out for someone to develop speech – just provide AAC modeling early and constantly and see what happens. (Modeling means using the chosen AAC method for your part of the conversation so that we have an example of how to use it, the way speaking children hear speech around them all day to learn from.) The autistic person you’re working with may eventually develop speech or they may not, but with AAC at least they have a chance of communicating in the meantime. That’s a human right for people of every age and every neurotype.

There is a flip side to this, and it’s when you’re assessing an autistic person who does use speech, but perhaps has articulation or pragmatic impairments. Or maybe their speech even seems completely adequate to you – but please don’t assume that it is adequate to them internally! Verbal and semiverbal autistic people might very much benefit from AAC. An autistic friend who studies neuroscience, Alyssa Hillary Zisk, recently published an article on this. For many of us AAC is easier on our overall motor planning demands, or we have better fine motor control than oral motor control, or it is easier to work with visuals than auditory words, or it just saves us energy that would better be directed towards other areas like executive function skills or sensory modulation. We may not be expressing quite what we’re really trying to say when we have to use speech, or we may be unnecessarily exhausted by it. So I would recommend that any autistic person you encounter in your work should be considered for AAC supports. And actually, I’ll extend that to anyone presenting to a speech therapist in general, because someone who struggles with communication might not have an accurate diagnosis yet.

How do you decide on an AAC method? Well, do all the formal assessments and checklists you want, but if the person has already demonstrated any ability to understand choices and make decisions, I’d suggest also just showing them the various options and directly asking what they want to try! For people who haven’t yet had the opportunity to demonstrate an ability to understand choices and make decisions, start modeling at least one AAC method, while pairing with speech, and see what the person shows an interest in. If people around them don’t display a bias towards a specific communication method, then the autistic person will show you their preference by trying out the one that works best for them.

In choosing an AAC method to trial it’s important to consider communicators’ strengths versus impairments in motor skills as well as sensory modalities – alongside what is going to be most effective for their environment. For example, if someone’s family refuses to learn sign language, it might not be a good option. Of course, if it’s what the communicator prefers, you should be pressing their caregivers to support that. Considering cultural competence is also important – for example, a child from an immigrant family might prefer a text to speech device that offers an accent that fits their heritage rather than a device that only has white American voices. And gender variance is more common in autistic people than the general public, so never make an assumption about which gender coded voice a communicator will prefer.

Okay, there’s my thoughts on assessment, stay tuned for next week’s post on working with AAC users!