“Remember not all AAC users have no verbal speech. Some of us have voluntary verbal speech. Some of us of involuntary verbal speech. Some of us have both voluntary and involuntary verbal speech. Some of us have verbal speech sometimes and not other times.” ~ Oliver Waite
“The goal should not be verbal speech but good communication.” ~ Alyssa Hilary
“Understand that sometimes I am able to use my voice and sometimes I have to use AAC.” ~ P Matthew Stinson
Daniel has always been described as verbal. He just doesn’t talk much. He had extensive speech therapy as a child to ensure his speech could be understood by others. However, he has always struggled to share his ideas or describe his struggles with communication. Now that he has AAC, Daniel feels more understood. But his parents keep telling him that he can speak, therefore he should. He wishes that his family understood that expressing himself with AAC is a success, not a failure.
Research on AAC has long recognized that many people require AAC even when they can speak. Some people acquire a speech disability with age or disease, like ALS or MS. The loss of speech can be gradual, and AAC may be slowly adopted on an as-needed basis. Others are born with a lifelong disability, like cerebral palsy. They may speak with their most familiar family and friends, but use AAC with strangers or when speech requires too much effort. These people use AAC to augment speech as much as to replace it.
The research literature is silent, however, on people who can speak but prefer AAC, such as some people with autism. Many autistic people embrace AAC as a way to have more effective communication than they can achieve with speech alone. We interviewed AAC users about their part-time AAC use.
A common message from these autistic people is that AAC is easier for them than speech. “My brain connects words better to my eyes and fingers than it does my mouth; it takes less energy to more precisely say something using AAC or just sending a text than it does to say the same thing with mouth words.”
These AAC users describe a struggle with everything from the motor demands of forming speech, to finding the right words and then getting their mouths to say them. Saoirse Tilton, an autistic advocate, described these differences as “brain-body disconnect, where our body won't listen to our brain.”
Mind-body disconnect as a speech impediment
Pat Mirenda, a prominent AAC researcher, called on the field of AAC to consider that the central feature of autism may be a significant movement disorder, rather than a social or behavioural deficit. This dyspraxia makes it difficult for autistic people to plan a movement, carry it out, or to prevent involuntary movements.
Scholars like Anne Donnellan and Elizabeth Torres partnered with autistic people, their families, and autistic researchers, to understand the lived experience of autism. Their research revealed significant sensory and movement differences in autistic people.
These atypical motor patterns affect how autistic people might plan, control and execute a variety of movements. Many autistic people find it much harder to do motor acts that neurotypical people might do effortlessly, such as forming “mouthwords”.
Producing speech is one of the most complex motor acts that humans perform. Yet very little research has asked what this means for supporting autistic people to communicate effectively. There is a strong need for research into discovering what strategies and technologies help autistic people communicate all their thoughts. For autistic people who struggle with auditory processing or oral motor coordination, symbol-based AAC may build on their relative strengths in visual processing. Symbol-based AAC, and tools like word prediction, may support communication by generating language through recognition memory rather than recall memory. Some autistic people may even experience such strong dyspraxia that they require alternative ways to access their AAC, such as eye gaze.
In the absence of research, and out of frustration with their unreliable speech, many autistic activists have discovered AAC on their own. These activists are spreading the word about AAC at conferences, in peer reviewed research, and across social media.
iOS devices make AAC more accessible to more people. In interviews with AAC users, we heard dozens of examples of how AAC can be a more reliable way to be heard than speech alone. Some of the AAC users we interviewed can speak words, but feel these words cannot express their intention: “I would struggle to find words to have a conversation with someone - which would cause me more stress and then cause my communication to get even worse to the point I would give up trying to verbally express myself.”
Many said they could not find spoken words to explain how difficult speech can be. "When you have issues with connecting head words to mouth words, it can be hard to EXPRESS that it is hard for you.”
Like most people, many of these AAC users struggle to speak while experiencing big emotions. “It’s not functional speech if all your mouth speech blurts out is ‘no no no no no’ when you’re in meltdown. Functional speech is when you actually articulate everything in your mind into mouth words that other humans can understand. A lot of autistics don’t have functional speech during meltdowns.”
AAC can help manage overwhelming stress. "I do still prefer Proloquo2Go during moments of particular overwhelm, even though it's not the pictures that are important to me. It mostly just helps to be able to locate the word rather than think it up on my own.”
AAC can be essential during a crisis
Some AAC users said that in an extreme crisis, such as on locked psych wards, AAC had prevented restraint and helped staff understand what was happening. “I was completely non verbal and so used AAC. I get very distressed in psych hospitals and end up having many meltdowns and being restrained a lot, but this time after I had calmed down I was able to explain better to staff how I felt and what had happened to cause the meltdown.
I was able to communicate with the psychiatrist and get my views across better.
I have never been able to do that in hospital before, and if I have tried then what I have said has been nothing like what I want to say at all.”
“Psychiatric crises are a really intense time that I have to deal with on a semi-regular basis, as someone with co-occurring chronic mental illness. Knowing that I now have a way to more reliably explain what's going on to the professionals at hospitals makes the situation a little less scary.”
AAC can prevent involuntary speech
Several said that it could be as hard to control what not to say as it is to say what they intend. “I might panic and suddenly say a LOT of things (which is, in and of itself, more stressful and exhausting, which fuels into my existing distress), but not all, or none, of those words are useful or actually talking about the REAL problem. They are trying to talk around the words that won't come out. The speech is 100% functional in that, mechanically, the act of verbal mouth speech is taking place, but the QUALITY of the communication is comparatively low.”
Many described a spiral where the attempt to speak something important only made communication worse. “When I am distressed I do not always show it, and I do not always express it because I cannot always SAY it. Instead the words build up and won't come out, so I can't get out of the situation, then I meltdown because it becomes too much, or I start acting up as a way to escape. I make excuses or say ‘I'm fine’ or ‘No problem’ or just ‘Sorry’ because I cannot make my mouth release the words that express how distressed I am.”
AAC can be more functional
All of these AAC users felt that speech was often not "functional." “I sound fluent, but that doesn't mean I can tell you that I need to!” They experienced a disconnect between what they intended to say, and what actually came out. “Speech isn’t functional unless it matches the words in your head.”
Many felt underestimated if they are judged by what they can speak, versus what they want to communicate. "My speech is not functional without AAC in the sense that I'm not able to have my needs met (for example, ask for help, explain what is wrong or what I need). I am also unable to show my higher level thinking.”
Choose communication over speech
Many of these AAC users were frustrated that professionals and families seemed satisfied with very limited “functional” speech. “Speech was pushed as the only option, and your speech had to be PERFECT.”
One framed it as a choice that families, educators, and therapists need to make: “Do they want good communication or passable communication as long as it is done through verbal speech? Just because someone can communicate using verbal speech does NOT mean they are communicating to the best of their ability - which might be better served by using AAC.”
AAC is access to communication
These AAC users deeply appreciate the way the AAC creates access to real communication. “With AAC, if I am struggling with getting the right words and speaking them, using AAC takes the stress away and allows me to communicate better because I am not having to do both mind word finding and then trying to say the words in the right order and in a way I mean.”
Several AAC users told us that the goal is not speech, its understanding. “Speech is not a superior form of communication. If you can understand me that's all that's important, even if I don't say things in the way you expect. People who can apparently speak some or all of the time might need or prefer AAC more than speech, and switching back and forth is just fine.”
The person who is sharing the idea is the best judge if they are being understood. "Verbal speech shouldn't be the goal. Good communication should be the goal. The only person who knows if someone has communicated well is the person who is trying to communicate.”
Consider AAC for anyone struggling with communication or speech impediments
The autistic AAC users we interviewed urged professionals to consider AAC for anyone they support. “Ditch your preconceptions who might want or need AAC! Assume it might be useful to anyone you're seeing. It’s worth offering regardless of how you perceive their verbal abilities. If you have a kid or adult in speech therapy for ANY REASON you should let them know that there are many ways of communicating besides speech. They have a right to explore any of them if they'd rather not prioritize ‘fixing’ their speech. The client should be in charge. It's up to you to provide as many options and as much information as possible so that the client can make whatever decision is best for them!”
People choose to use AAC if it improves their communication. Help more people discover the communication tools that might help them be understood.