When your voice gets hijacked: speaking, exhaustion, and the right to other ways of communicating.
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This post aims to shed some light on why some autistic people lose their speech exactly when they need it most, what the people who live it firsthand tell us, and why the answer is not only handing someone a tool, but also changing the world that listens to them.
At the end of my previous post on AAC I left an idea half open, and I have spent weeks wanting to come back to it, because I think it is one of the least understood. I said that there are many starting points on the way to augmentative and alternative communication, and that among them are people who speak most of the time but who, when they become dysregulated, feel their voice has been hijacked. I wrote that for them, having a system within reach is what gives them back access to communication exactly when they need it most.
Today I want to stop on that phrase, because that hijacking of the voice is real, it has a biological explanation, and it happens to far more people than we imagine. And because here I do not want to speak only from theory, but also from the voices of the people who live it.
Today I want to stop on that phrase, because that hijacking of the voice is real, it has a biological explanation, and it happens to far more people than we imagine. And because here I do not want to speak only from theory, but also from the voices of the people who live it.
The absence of autistic voices
Most of what has been published about AAC is written about autistic people, not from their experience. For decades, research focused on children considered "minimally verbal" and on measuring which intervention "worked," almost always in therapy settings and almost always limited to asking for things: a break, food, objects, and so on. What the person felt, chose or needed in their real life was left outside the frame.
That is why the study by Donaldson, corbin and McCoy (2021), titled "Everyone Deserves AAC," seems so valuable to me. It is participatory research, one of the people who signed it, endever* corbin, is autistic, speaks, and uses AAC, and took part in the research at every stage as part of the team not as a "case." That matters, and it matters a great deal, because it is the difference between studying someone and building knowledge with someone. Nothing about us without us is not a slogan. It is an ethical principle.
And that is not an isolated piece of research. Happily, there are more and more studies led by people who use AAC. In 2025, for example, a group of AAC users and allies, among them Grant Blasko and Jordyn Zimmerman, published a paper titled "Nothing about AAC users without AAC users." Along the same lines, endever* corbin points out that AAC research, when it leaves out the people who use it, ends up perpetuating the very "voicelessness" it says it wants to solve. Listening to these people is not a matter of courtesy. They are the ones who live it, and they have a more accurate sense of it. The rest of us, from the outside, only see the surface, and we have spent far too long making decisions about AAC, and about the people who use it, without listening to them.
Why the voice gets hijacked
Here I want to do the same thing I did in my previous post with myelination: go down to the biology, because understanding it changes the way we see this completely. The question is a concrete one: why does a person who speaks fluently almost every day suddenly find, in a crisis, at a medical appointment or at the end of an overloaded day that they cannot put together a single sentence?
The first thing to let go of is the idea that "speaking" is one single thing. Speech is the last step in a long process: having the idea, finding the words, ordering them with grammar, planning the movement, and only at the very end, executing the coordinated movement of around a hundred muscles at high speed. Any one of those steps can fail, or can cost an enormous amount of effort.
This is where what we already discussed about apraxia and myelination comes in. For many autistic people speech was never a fully automatic movement, but a motor sequence that demands planning and effort. And there is a biological clue that helps make sense of it. We know that myelin, the sheath that coats nerve pathways, makes whatever travels along them faster and more automatic, and that this coating is reinforced through use (Gibson et al., 2014; Kato & Wake, 2021). We also know that in autism the development of myelin follows a different trajectory, though a complex one: not simply "less," but with atypical patterns that vary by brain region and by age (Adès & Bouslama-Oueghlani, 2026). From the monotropism model, it has been proposed that the pathways tied to deep interests, the ones used most, become extraordinarily fluid, while others, such as those for speech, stay more expensive and demand conscious effort even on a good day (Murray, Lesser & Lawson, 2005). This should be read as an explanatory framework and not as an established fact, since the direct empirical evidence on it is still scarce. What is documented is that motor speech difficulties, including apraxia, appear frequently alongside autism, although the figures vary enormously across studies (Tierney et al., 2015; for a more nuanced reading, Shriberg et al., 2011).
That is why the study by Donaldson, corbin and McCoy (2021), titled "Everyone Deserves AAC," seems so valuable to me. It is participatory research, one of the people who signed it, endever* corbin, is autistic, speaks, and uses AAC, and took part in the research at every stage as part of the team not as a "case." That matters, and it matters a great deal, because it is the difference between studying someone and building knowledge with someone. Nothing about us without us is not a slogan. It is an ethical principle.
And that is not an isolated piece of research. Happily, there are more and more studies led by people who use AAC. In 2025, for example, a group of AAC users and allies, among them Grant Blasko and Jordyn Zimmerman, published a paper titled "Nothing about AAC users without AAC users." Along the same lines, endever* corbin points out that AAC research, when it leaves out the people who use it, ends up perpetuating the very "voicelessness" it says it wants to solve. Listening to these people is not a matter of courtesy. They are the ones who live it, and they have a more accurate sense of it. The rest of us, from the outside, only see the surface, and we have spent far too long making decisions about AAC, and about the people who use it, without listening to them.
Why the voice gets hijacked
Here I want to do the same thing I did in my previous post with myelination: go down to the biology, because understanding it changes the way we see this completely. The question is a concrete one: why does a person who speaks fluently almost every day suddenly find, in a crisis, at a medical appointment or at the end of an overloaded day that they cannot put together a single sentence?The first thing to let go of is the idea that "speaking" is one single thing. Speech is the last step in a long process: having the idea, finding the words, ordering them with grammar, planning the movement, and only at the very end, executing the coordinated movement of around a hundred muscles at high speed. Any one of those steps can fail, or can cost an enormous amount of effort.
This is where what we already discussed about apraxia and myelination comes in. For many autistic people speech was never a fully automatic movement, but a motor sequence that demands planning and effort. And there is a biological clue that helps make sense of it. We know that myelin, the sheath that coats nerve pathways, makes whatever travels along them faster and more automatic, and that this coating is reinforced through use (Gibson et al., 2014; Kato & Wake, 2021). We also know that in autism the development of myelin follows a different trajectory, though a complex one: not simply "less," but with atypical patterns that vary by brain region and by age (Adès & Bouslama-Oueghlani, 2026). From the monotropism model, it has been proposed that the pathways tied to deep interests, the ones used most, become extraordinarily fluid, while others, such as those for speech, stay more expensive and demand conscious effort even on a good day (Murray, Lesser & Lawson, 2005). This should be read as an explanatory framework and not as an established fact, since the direct empirical evidence on it is still scarce. What is documented is that motor speech difficulties, including apraxia, appear frequently alongside autism, although the figures vary enormously across studies (Tierney et al., 2015; for a more nuanced reading, Shriberg et al., 2011).
What people experience from the inside already has a name in the literature. When speech fails, it doesn't fail in just one way. Zisk and Dalton (2019) described three types of autistic speech, and Alyssa Zisk, endever* corbin and Tuttleturtle have recently proposed a fourth (Zisk, 2024; corbin, 2025):
What it feels like from the inside
If you know an autistic person who "speaks well", this next part will interest you. Because the hijacking of the voice does not feel the way it looks from the outside.
- Intermittent speech: the person cannot always speak.
- Unreliable speech: what comes out of the mouth may not match what the person meant to say or would have chosen to say.
- Insufficient speech: the person speaks accurately, but not enough to express everything they need to communicate.
- Expensive speech: speech may be effective, but at a significant cost in energy, cognitive resources or other internal resources, affecting what is left available for other or later tasks.
Of the four, expensive speech is the one I most want us to understand here. It names something many autistic people have been describing for a long time. Speech works, yes, but costs them so much that afterwards they have nothing left for anything else. The person who has explained this most clearly is endever* corbin. In 2025 they wrote a first-person piece titled "Speech is exhausting." corbin describes themself as a multiply disabled, semispeaking autistic self-advocate. After years of speech-centric services as a child, they spent roughly two decades pushing themself to use what they call "mouthwords" as their primary means of communication, and the cost was high. And they say something even more interesting, that multimodal AAC massively decreased their cognitive load freeing up resources to participate meaningfully in other parts of life. That goes against what we usually assume. AAC did not take speech away from corbin, it gave back something bigger: the energy to be in the world, not only to produce words.
The hijacked voice I am describing lives mostly between two of those types: intermittent speech and expensive speech. But what sets off the hijacking is dysregulation. When the nervous system enters a neuroception of threat, whether from sensory overload, stress, exhaustion or accumulated allostatic load, it shifts state and redistributes its resources toward survival. In that emergency reallocation, the most expensive and least automatic functions are the first to be left without a budget. And speech production, which for many autistic people was already extremely expensive, is exactly that kind of function.What it feels like from the inside
If you know an autistic person who "speaks well", this next part will interest you. Because the hijacking of the voice does not feel the way it looks from the outside.It isn't that the person doesn't understand, or has nothing to say. It isn't that they are angry, or difficult, or shutting you out. Inside, everything is usually there, the whole idea, the wish to answer, sometimes even the finished sentence waiting to come out. What breaks is the last stretch, the most expensive one, the bridge between that sentence and the mouth. It is the experience of having the words right there while the body, exhausted, simply cannot get them out.
And that is why it hurts so much when it happens. The voice is rarely hijacked over a relaxed meal. It gets hijacked at the important moments: the medical emergency, the argument, the paperwork, the end of a day that has already asked too much, exactly when the person needs it most. Many people describe that moment with a precise mix of clarity and confinement, since they keep thinking with total lucidity, while from the outside they appear to be "not responding".
If you are autistic and something here resonates, I want you to know that you do not need a diagnosis of apraxia for this to be your case, and you do not have to be "non-speaking" for it to count. Expensive speech and intermittent speech are broad, rarely named experiences that belong to people who speak most of the time and still have moments (or even whole days) when the voice is not available.
AAC is not a replacement for speech. It is access
Here is where it turns. We tend to think of AAC as a prosthesis: speech is lost, the machine replaces it. But the people who use it describe something different. corbin did not trade speech for AAC. They added options: high-tech, low-tech backups, sign language, their own gestures and sounds, and it is that possibility of switching channels depending on the moment that gave them back the ability to take part. A social environment that respects their need to regularly switch modalities is, literally, what lets them show up and participate authentically.This reorders everything. If the problem were only "producing words," a device would be enough. But the real problem is access, being able to say what you need when you need it through whatever route your brain and your body allow at that moment. AAC does not make you "less of a speaker", it gives you a plan B for the days when speech becomes expensive or disappears, and in doing so it frees up energy for everything else. In the words of the participants in Donaldson and her colleagues' study, successful communication is being able to use the method that works best in the moment, and having the other person simply accept that method.
Many autistic adults carry a heavy internal demand: speak whatever the cost, because speech is the only thing other people respond to. corbin calls this forcing speech to their own detriment. In "Everyone Deserves AAC," that forced communication appears again and again, families and therapies that pushed speech, devices taken away in hospitals, people who do not give you time to type. The result is an internalized ableism that whispers that using AAC would be "cheating" or "giving up." It is not. Choosing the route that costs you less is not giving up. It is self-determination.
Self-determination is not the same as independence
There is something corbin names that I want to hold onto, because it touches the root of all this. We tend to celebrate autonomy, but sometimes we confuse it with independence, specifically with the spirit of "managing everything on your own." Taking corbin's words, self-determination does not require independence. They go further, the very idea of total independence is a myth that ends up propping up ableism, because it makes us believe that needing support is failing. The reality is that no one is entirely independent. We all live inside a network of give and take, of needing and supporting. We are, in their words, a human ecosystem.This changes how I understand AAC. Choosing the route that costs you less, asking for time, writing instead of speaking, leaning on a communication board, is not giving up or becoming "dependent." It is self-determination exercised within the interdependence we are all already living in. The autistic person decides how to communicate; the environment should do its part so that decision is possible. And that is why I keep coming back to the same thing, which is that the weight cannot fall only on the person using AAC. A world that learns to wait, not to interrupt, to accept the channel the person chooses, is not "assisting someone incapable", it's doing its part in a network no one should be left out of.
You don't have to "earn" AAC
One of the themes of that study, taken from the participants' own words, is that there is nothing strange about AAC. It is a form of communication as valid as any other. The idea that it is "the last resort," something you turn to only once speech has failed, is an old and damaging myth. AAC is simply one of the many human ways of communicating, and as corbin reminds us, AAC is not just devices, and it is not just language either. Disabled people have been inventing their own ways of communicating probably for as long as humanity has existed.That is why you don't have to prove that you "speak little enough" to have the right to explore it. There is no such thing as too articulate, or too late, or not disabled enough for that. Presuming competence, meaning trusting that the person understands and has something to say, and giving them access to a form of communication that works for them, should not be a prize you earn. It should be the starting point. Everyone deserves AAC, and as we saw in the practical guide to getting started with AAC, that holds whatever system turns out to work for each person.
A pause for reflection, if you are a speaking autistic person:
Think about the last time your voice became expensive. An argument, a medical appointment, the end of an overloaded day, or whatever just came to mind. What would have changed if you had had a written sentence within reach, a communication board, an app, even a note on your phone? And how does it feel to imagine yourself using those supports? That it would be "cheating"? That you are worth less for not solving it with speech alone? Whose voice did you learn that from?
The thread that joins speaking and non-speaking people
And here comes the most important part of this article. It may sound contradictory to ask an adult who speaks to use AAC. What for, if they "can manage"? But as we have seen, that "managing" has an invisible cost: expensive speech. And carrying it in silence doesn't only wear down the speaking autistic person, it also keeps alive a myth that weighs on the whole community, the one that says AAC is a last resort, something you only reach once you have failed. A myth that hits hardest, precisely, on non-speaking autistic people.
As long as AAC is used only by those who "have no other option," it will stay marked as a sign of deficit, as the place you end up when everything else has failed. But when AAC is used visibly and without guilt, by anyone who needs it to any degree, several things happen at once. The myth of the last resort breaks, and it becomes clear that this is a legitimate way of communicating, not a defeat. Switching between modalities and using supports gets normalized, because they stop looking like something exceptional. And above all, role models appear.
This last point is no small thing. In Donaldson's study, several people point to the same thing, that having older disabled people as mentors, people with the same lived experience, makes an enormous difference. It is the same force of representation that has been studied so much in other historically excluded communities, such as Black and racialized communities. Seeing someone like yourself take up space changes what you dare to imagine for yourself. Autism, like so many other differences, is lived and judged inside a culture that decided in advance which bodies and which voices count.
And there is one more effect, maybe the most important one for the point I opened with. When AAC circulates, the environment learns to listen to it. It gets used to giving time, to waiting while someone types, to not snatching the device away, to answering a communication board the way you would answer speech. So on the day someone appears who depends entirely on AAC to be heard, the world is already a little more ready. Because, and this is the key part, the voice does not only get hijacked by biology, it also gets hijacked by environments that rush, interrupt, and do not presume competence. And changing those environments is on all of us, not only on the person using AAC.
As long as AAC is used only by those who "have no other option," it will stay marked as a sign of deficit, as the place you end up when everything else has failed. But when AAC is used visibly and without guilt, by anyone who needs it to any degree, several things happen at once. The myth of the last resort breaks, and it becomes clear that this is a legitimate way of communicating, not a defeat. Switching between modalities and using supports gets normalized, because they stop looking like something exceptional. And above all, role models appear.
This last point is no small thing. In Donaldson's study, several people point to the same thing, that having older disabled people as mentors, people with the same lived experience, makes an enormous difference. It is the same force of representation that has been studied so much in other historically excluded communities, such as Black and racialized communities. Seeing someone like yourself take up space changes what you dare to imagine for yourself. Autism, like so many other differences, is lived and judged inside a culture that decided in advance which bodies and which voices count.
And there is one more effect, maybe the most important one for the point I opened with. When AAC circulates, the environment learns to listen to it. It gets used to giving time, to waiting while someone types, to not snatching the device away, to answering a communication board the way you would answer speech. So on the day someone appears who depends entirely on AAC to be heard, the world is already a little more ready. Because, and this is the key part, the voice does not only get hijacked by biology, it also gets hijacked by environments that rush, interrupt, and do not presume competence. And changing those environments is on all of us, not only on the person using AAC.
And here is something that often gets overlooked. Speaking and non-speaking autistic people are treated as two separate worlds, sometimes even within the autistic community itself. But expensive speech is one of the threads that joins them. It is not a universal experience, it is part of their disability, something particular to the autistic experience. And that is exactly why it should bring them closer, because speaking and non-speaking people face, in different degrees, the same neurological difference, the one no amount of willpower erases.
From judgment to curiosity
We often start from judgment. We demand speech, we read silence as disinterest, or we see AAC as giving up. It is rarely out of bad faith. Almost always it is because we never came across anything else. That is why this text is not a reproach but an invitation, to trade judgment for curiosity, to ask what is behind something before drawing conclusions, and to keep within reach the tools that give access back.And if you are the autistic person who speaks, that shift in perspective is for you too. The harshest judgment may not come from outside, but from that voice of your own that demands you speak whatever the cost, that calls using supports "cheating," that confuses running yourself down with doing your best. Trading judgment for curiosity, right there, means asking yourself what you really need in each moment, and giving yourself permission to use it, without having to earn it.
References
- Blasko, G., Light, J., McNaughton, D., Williams, B., & Zimmerman, J. (2025). Nothing about AAC users without AAC users: a call for meaningful inclusion in research, technology development, and professional training. Augmentative and Alternative Communication, 41(3), 184–194. https://doi.org/10.1080/07434618.2025.2514748
- corbin, e*. (2025). Speech is exhausting. Augmentative and Alternative Communication, 41(3), 245–247. https://doi.org/10.1080/07434618.2025.2513907
- Donaldson, A. L., corbin, e*., & McCoy, J. (2021). "Everyone deserves AAC": Preliminary study of the experiences of speaking autistic adults who use augmentative and alternative communication. Perspectives of the ASHA Special Interest Groups, 6(2), 315–326. https://doi.org/10.1044/2021_PERSP-20-00220
- Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398
- Shriberg, L. D., Paul, R., Black, L. M., & van Santen, J. P. (2011). The hypothesis of apraxia of speech in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 41(4), 405–426 https://doi.org/10.1007/s10803-010-1117-5
- Zisk, A. H. (2024, January 17). Part time AAC use: What does it mean and why does it matter? [Presentation]. Webinar hosted by the United States Society for Augmentative and Alternative Communication (USSAAC).
- Zisk, A. H., & Dalton, E. (2019). Augmentative and alternative communication for speaking autistic adults: Overview and recommendations. Autism in Adulthood, 1(2), 93–100. https://doi.org/10.1089/aut.2018.0007