One thing that often confuses people new to the autism world are all the acronyms. It seems like just about everything has a three-letter acronym associated with it, and I can understand why it would be difficult to keep all of them straight or remember what they all stand for. But there’s one acronym that I want you to remember, because it is incredibly important when it comes to communication rights: AAC.
AAC is short for Augmentative and Alternative Communication. AAC refers to nonstandard ways of communicating, often but not always involving the use of some form of technology. In a very loose non-technical sense, AAC can refer to any method of communication used in place of speech, which includes everything from text-to-speech apps, gesturing, sign languages, letter boards (either via pointing or eye tracking software), writing, picture exchange, and a variety of other methods. Honestly, there are probably just about as many AAC methods as there are people who use AAC.
AAC is somewhat ubiquitous within the autistic community, in some ways it has even become a part of autistic culture. Somewhere between 1/4th and 1/5th of autistic people are either non-speaking or minimally speaking, and often rely on AAC to communicate. But did you know that even autistic people who are capable of speaking can benefit from using AAC? You see, speaking vs. non-speaking is not a binary switch, there are lots of people who can speak but have trouble articulating some things, or have trouble with spontaneous speech, or are capable of speech sometimes but not all the time, or find using speech incredibly exhausting. This is a broad category sometimes called “unreliably speaking” and believe it or not this is actually the category I identify myself with. It might be that the majority of autistic people fall into the unreliably speaking category.
Thus, there are many autistic people who are part-time AAC users, and many others who could probably benefit from utilizing AAC but haven’t yet committed to doing so. There are also many autistic people who use multiple different means of communication regularly, which is sometimes called being a multimodal communicator. AAC usage can be flexible and dynamic, just as communication needs are flexible and dynamic.
The goal of AAC should always be communication. This seems very obvious, but unfortunately there are ways in which AAC is sometimes approached that actually hinders communication rather than promoting it. One of the most common ways this occurs is when parents/caregivers are encouraged to limit AAC usage as much as possible or discourage AAC usage on the grounds that AAC usage will prevent the acquisition of speech.
Well, to start off, AAC usage does not hinder the acquisition of speech. For one thing, when an autistic person has trouble with speech it is not because we’re choosing not to speak, it’s because we physiologically cannot speak, no more than a blind person is capable of seeing. As such, it is useless to try and somehow motivate a non, minimal, or unreliably speaking autistic person into speaking.
But more importantly regarding this topic, AAC is very slow. Even faster forms of alternative communication like fluent sign language use are typically slower than speech. Speech can also be far more spontaneous than many (but not all) AAC methods. This is not to say that speech is inherently better than any other communication method, but it does mean that, for the simple sake of convenience, speech is naturally self-reinforcing. Nobody ever thinks “oh, well I could just say this sentence out loud, but instead I’m going to take the time to type it out on my talker instead.” Limiting AAC access will not encourage speech, it will limit communication and prevent the development of fluent use of AAC. (And really your goal should not be speech at all costs, it should be fluent and comfortable communication, in whatever format that may look like, but more on this later).
Another way that AAC is often used to limit communication is through the rationing or limiting of words that an AAC user has access to. Some AAC methods, such as letterboard/keyboard spelling, are very open ended because the user has access to literally every word or phrase imaginable through spelling. Other AAC methods, such as card-based AAC, picture-based AAC, and many tablet AAC apps, are less open ended and require words and phrases to be pre-programmed or pre-written in. Often times only a minimal number of words and phrases are allowed to young or new AAC users with reasons such as “to prevent the user from being overwhelmed” being provided for why the initial vocabulary is so low. The most egregious examples of this are AAC devices which have only five or six built-in phrases, often functionally useless phrases such as “I like to eat bananas!”
But whatever your excuse is, AAC users need to be given access to as broad a vocabulary as possible from as early on as possible. Even if it is necessary to temporarily simplify functionality purely for the purpose of teaching the mechanics of how to use a particular AAC method, a full vocabulary should always be available and accessible, and AAC users should never have to “earn” access to more words by mastering previous vocabulary. This is actually one of several very big problems with PECs (some people refer to any picture-based communication as PECs, but here I am referring specifically to the trademarked PEC system. Picture-based AAC is fine, PECs as a system is not. Don’t touch PECs, or anything ABA-based, with a ten-foot pole. Take it into a desert and bury it. Wear gloves and a respirator). PECs are typically set up so that the user has to earn access to more vocabulary by proving “mastery” of a previous set of words, often starting with a set of nouns, then moving to a set of verbs, etc.
The thing is, this does not promote the development of communication or language skills. It promotes the Pavlovian usage of picture cards to gain small external rewards, which is not communication. Communication is about sharing ideas, emotions, needs, and desires with others. In order to do this, an AAC user should have access to as large a vocabulary as someone their age would typically have. In addition, typically-developing children do not have to “earn” access to new words by proving over and over again that they know other words, they can use new vocabulary as quickly as they are ready for it. So it should be with AAC users.
Ideally, the AAC user should be the one who gets to select the set of words and phrases that is present on their device/in their notebook/etc. and should always be allowed to add new words to their vocabulary. If you don’t understand why this is important, try this experiment: take fifty notecards and write out fifty words that you think you will need to use in a day. Or actually, scratch that, have someone else write out fifty words on fifty notecards that they think you will need to use. Then, go through a day using those fifty notecards as your only means of communication. No, you can’t add any new ones. Now do you see the importance of allowing an AAC user access to a large, self-generated, flexible vocabulary rather than a rigid therapist or parent generated set of vocabulary that the user cannot add to?
The Communication First Approach
One thing that I frequently find that parents with young kids who have recently been diagnosed as autistic worry about is whether or not their kid will ever speak. Although I generally understand this as a valid concern someone might have due to their lack of experience with the diversity of options for communication, quite frankly this is the wrong question to be asking. I always say to them that your child may speak soon, may speak later, or may never speak at all, but regardless of the case the focus should not be on speech, but rather on communication. You should get to a point that it doesn’t matter whether they talk or not, because they will be able to communicate either way.
What I strongly recommend is what’s called the total communication approach. The total communication approach essentially has two aspects to it: that communication is prioritized over focusing on speech and that a variety of methods of communication are made available so that the person in question can communicate in whatever way is most comfortable and effective for them.
The total communication approach takes the perspective that speech is not the only valid means of communication. Therefore, developing communication is prioritized over developing speech. Speech, if it comes, is a bonus, but the communication first approach recognizes that speech is not the only method of communication. Thus, hours that might be spent trying to develop speech are instead spent on developing AAC. This approach allows for the prioritization of communication, and I’ll be the first to tell you that communication access is always a game changer, and I know this because I have experienced this to some degree and have good friends who have experienced this to an even greater degree and say the same thing. It is so important that everyone is able to use communication to express thoughts, express personal interests and desires, express needs, and build relationships, among other things. If you focus only on speech and neglect any other form of communication (which happens far too often in the autism world) you are missing out on providing access to true communication.
Access to communication can also help protect a person from abuse. Unfortunately, autistic individuals are significantly more likely to be the victims of sexual abuse, and often time the abuser will attempt to use a person’s lack of verbal communication ability to get away with their crimes. The ability to report abuse can deter potential predators and can help bring about justice if the worst was to happen.
The second aspect of the total communication approach involves providing opportunities for using multiple different modes of communication. Now, when deciding what type of AAC may work best for you or someone you know, it is best to work with a qualified SLP (that’s Speech Language Pathologist), ideally one who agrees to focus on communication rather than the development of speech at all costs. But regardless of what you settle on, I still think it is important that multiple different modes of communication are made available. For some people it may be easier to say one thing one way and other things another way, if that makes sense, and so being a multimodal communicator can improve one’s ability to communicate overall.
Autistics who are multimodal communicators are actually fairly common. I know autistics who communicate with a combination of speech, sign language, AAC tablet programs, writing, and abstract forms such as drawing and painting. It may seem complex, but for the multimodal communicator such an approach allows them to be incredibly articulate and get nearly all of their thoughts and feelings out into the world. Although it is useful to have one particular method of communication that you are most fluent in (with 99% of the world having “speech” as their preferred method of communication, don’t think you’re exempt from these concepts, you non-disabled folks out there!), for many autistic people it is often important that multiple methods of communication are available to maximize one’s, well, let’s just say “communicative range.” Therefore, don’t be afraid to continue expanding your repertoire of AAC if the communicator in question is ready for it.
Finally, I do have one tip that I have picked up from various sources that may be of use when building fluence with any sort of AAC. This tip is primarily for parents/caregivers who are trying to build AAC fluency with their young child/children. If you can, try practicing modelling AAC usage with the AAC user. Modelling is how young children learn to talk: they observe the language being used in real life scenarios and eventually start to pick up on how to use the language (most non-speakers do this as well, they just run into problems when it comes to actually speaking). If you can afford it, have two identical AAC systems, give one to the AAC user and use the other one around the house or otherwise throughout the day for communication. Use the AAC system to ask questions, share information, and just have conversations. In theory, the AAC user will gain fluency naturally simply by observation, in the exact same way that a very young child learns to speak simply by observation.
AAC usage is a very important aspect in the lives of many people who have difficulty with speech, but unfortunately the general public often isn’t aware that it’s a thing. The most experience with AAC that many people have is through the late Stephen Hawking or with the TV show Speechless, which features a non-speaking main character (and neither Hawking nor the Speechless character are/were autistic).
This lack of experience with AAC probably contributes both to much of the misunderstanding of AAC that exists and this ableist idea that speaking is somehow “superior” to any form of AAC communication. It’s troubling that so many parents to non-speaking autistic children haven’t even heard of AAC. It’s troubling that AAC is so often seen as a sort of “last resort” in case someone still has trouble with talking after thousands of hours of intensive speech therapy. It’s troubling that AAC is seen as something that should be rationed, restricted, or earned.
I understand that not every non-speaking autistic person has been able to achieve full language fluency with AAC (or at least not yet). But many have. At the very least many are capable of communicating basic needs and wants with AAC, which is still about a million times better than the alternative. And for those who haven’t, it may very well be poor implementation or the wrong method rather than that the person in question is incapable of using any form of AAC.
This is my first attempt at tackling this very complex and in-depth topic, but I do hope you’ve learned something. If you’d like to learn more about AAC I recommend the Facebook group Ask Me, I’m an AAC user! where you can learn more about AAC and communication in general from both full and part-time AAC users. Keep in mind there is a 24 hour rule, whereby the only people who can comment on a post for 24 hours after it is posted are AAC users and the original poster, to give time for AAC users to interact with a post without their voices being drowned out.
*Disclaimer: I am not an SLP or any other sort of therapist or medical professional. All knowledge expressed here comes from my personal experience and what I have learned from others. Please consult a professional when it comes to implementing AAC usage to account for the nuance and complexities of your unique situation.