Communicating in Times of Stress

In moments of intense stress—when speaking up and being heard may be more important than ever—some people may lose the ability to communicate in the ways they usually do.

This resource on communicating in times of stress was written by CommunicationFIRST Program Associate Ren Koloni. Ren is an autistic part-time user of augmentative and alternative communication (AAC) tools and supports who has experienced both mental health crisis as well as temporary speech and language loss due to stress. This resource was developed as part of CommunicationFIRST’s partnership with the Link Center, a federally-funded national resource center dedicated to improving supports for children and adults with intellectual and developmental disabilities (I/DD), brain injuries, and other cognitive disabilities who have co-occurring mental health conditions. As a Link Center partner, CommunicationFIRST is focused on raising awareness about the lived experiences of people with speech-related disabilities and mental health conditions. 

This resource contains two parts. The first is aimed at people who have speech-related disabilities and mental health conditions. The second is aimed at lifeline workers and other allies. 

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A RESOURCE FOR PEOPLE WITH SPEECH-RELATED DISABILITIES AND MENTAL HEALTH CONDITIONS:

Losing speech and/or language in times of stress can happen to anyone, and you don’t have to have a diagnosis or a disability to experience it. It might happen to some people more often, like:

• • Autistic people
  • People with intellectual disability (ID)
  • People with brain injuries
  • People with mental health problems like post-traumatic stress disorder (PTSD), situational mutism, anxiety, or schizophrenia
  • People with neurological problems like dementia, aphasia, or Parkinson’s disease
  • And many others

Losing speech and/or language can happen to people who usually communicate with speech, and to people who usually use AAC tools and supports.

When you lose speech or language in times of stress, you might feel like:

• • The part of your brain that translates thoughts to words has stopped working.
  • You need more time to process information than you usually do.
  • Your words or thoughts are feeling “jammed” or “stuck.”
  • Your thoughts are going in circles.
  • You are having trouble with new or different words and ideas.
  • Your whole mind suddenly goes blank.
  • Your body feels too cold or too heavy to move or control, or you feel frozen.
  • You can’t move your mouth or make noise from your throat, even if you can move other parts of your body.

WHAT CAN I DO WHEN I AM HAVING MORE TROUBLE COMMUNICATING THAN USUAL?

Having trouble communicating might be a part of your life that you can’t avoid. But it is important to be able to communicate with others, especially when you’re stressed, upset, in pain, dysregulated, or in a difficult or dangerous situation. So what can you do?

• • Time and space can make all the difference. Sometimes the answer is as simple as patience, peace, and quiet. Slow down, don’t force it, and make peace with what you can do in the moment.

• • Use the skills you’ve already learned to support yourself when you’re feeling stressed. For example, you might do breathing exercises, retreat to a dark and quiet place, watch your favorite show or listen to your favorite music, or lay down with a weighted blanket or comfort item. The same strategy won’t work for everyone, so you’ll need to explore to find out what works best for you.
    

It can help to tell supporters what strategies work for you, so they can offer help if you need it. A crisis plan is one good way to keep this information in one place and share it with others.

• • Prepare for times when you might have more trouble communicating because of stress. Consider printing out some facts about what happens to you when you lose speech or language. Take this printout with you wherever you go, so you can quickly explain what’s happening, even if you can’t communicate like you usually do. You might include things that can trigger your speech / language loss, ways you do or don’t want people to help you, a description of the AAC you use, and anything else you might want people to know. Laminating this page can make it last longer.

• • Figure out the kinds of help you want, before you lose speech. Make sure your supporters know what helps you and what hurts you. Does it help to have them in the room, or close enough that you can feel that they’re nearby? Can they say your words aloud for you after you type them? There may be things you don’t want them to do, too. Maybe you can’t stand it when people finish your sentences, or maybe it’s okay only if a certain person does it. If your supporters know how to help you, it can make speech and language loss a lot less frustrating.

WHAT IS AAC, AND HOW CAN IT HELP?

AAC stands for Augmentative and Alternative Communication, and it’s the phrase for a lot of different strategies and tools that people use to communicate when they can’t use speech. Some people use AAC all the time, and some people only use it sometimes, like when they are under stress. AAC is for anyone and everyone who needs it, no matter when, why, or how often they can’t use speech to be heard and understood.

If you think you’ve never used AAC before and wouldn’t know where to start, you’re wrong! Everyone communicates without speech. Pointing and gesturing is AAC. Making facial expressions is AAC. Typing on a keyboard or a phone is AAC. Using emojis is AAC. 😀

To help manage stress during episodes of speech or language loss, stick with methods you feel comfortable with. If you’ve never used a letterboard before, a crisis probably isn’t a good time to introduce it! But maybe you would feel comfortable with something you’ve done before, like typing on a keyboard or using emojis.

Practicing with AAC when you are feeling calm and able to communicate more easily can make way for new options later on. It can help you find the methods that work best for you. You might find that an option you’ve never used before is your favorite.

Here are some different kinds of AAC you can use:

• • Typing words letter-by-letter on a computer, a tablet, or a smartphone
  • Using an AAC app or software with pre-programmed words and phrases
  • Using emojis or pictures
  • Drawing or writing by hand on a whiteboard or piece of paper
  • Using gestures or sign language
  • Letterboards: rectangles made of cardboard or plastic with the letters of the alphabet, and sometimes common words like Yes and No, written on them
  • Communication boards: like letterboards, but with pictures and words

You can make your own communication boards with words that are important to you. You can make more than one for different situations and settings, like work, healthcare, or errands.

Talk to your supporters about your options, and talk about what you want to happen when you lose speech or language. Remember, don’t wait until you’re struggling to communicate. You deserve to have access to options that support you in being heard and understood.

WHEN STRESS MAKES IT HARD TO USE AAC

Stress can make it hard to communicate at all, and that includes communication with AAC. Even full-time AAC users who have used the same AAC support every day for years may have trouble using it if they’re very stressed.

If you are having trouble using AAC, there are some things you can do.

• • Change things in your environment that are stressing you out, like loud noises or bright lights. Not everything can be changed, but some things can.
  • Find things that help you feel more comfortable, like your pet, a blanket, a favorite stuffed animal, or a drink of water.
  • Some people have an easier time communicating when they have a trusted person nearby. If you have a trusted person, ask them to sit with you, or even just be in the same room.
  • Try a different kind of AAC that feels easier. For example, even if you are very used to typing your words, it might sometimes be easier to use things like emojis or pictures.

Some people might have trouble communicating in their usual way even after their stress has gone away. It might take a few days, weeks, or months. This can be frustrating, but it happens for a reason: your body needs time and energy to recover from stress.

Whether you can communicate in your usual way as soon as you feel better, or whether it takes a while, you always deserve kindness, patience, and respect. You always deserve access to things that help you to be heard and understood.

WHAT ELSE SHOULD I KNOW?

• • Trouble communicating isn’t anyone’s fault. You might feel afraid, anxious, upset, guilty, frustrated, angry, or numb when you lose speech or language. This is how some people’s brains and bodies work, and that can be upsetting, scary, and even dangerous, depending on the situation and the people around you—but speech or language loss is not your fault. Nobody should make you feel like you have to apologize for having trouble communicating.

• • Using AAC isn’t shameful, annoying, or childish. Nobody should make you feel like you’re wrong, bad, or silly for using AAC, whether you need it for every word or only when you’re stressed. AAC is a way to access communication, just like wheelchairs are a way to access movement, and captions are a way to access sound. AAC is normal, and it can change our lives. Dismissing AAC or treating it as worse than speech is ableism, plain and simple.

• • Chronic stress—for example, stress that comes from ableism, abuse, poverty, or racism—is stress, too. All stress takes a toll on bodies and minds, and it can show up in lots of ways you might not expect. Even if you’re used to the chronic stress you experience or don’t feel very emotionally affected by it, it can still cause speech loss. There’s a lot of chronically stressful situations you can’t change on your own, and reducing your stress isn’t always an option. But understanding the source of the stress—and having safe spaces to talk about it—can help make things easier, and can help you understand your speech loss.

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A RESOURCE FOR LIFELINE WORKERS AND OTHER ALLIES:

Losing speech and/or language in times of stress can happen to anyone, regardless of diagnosis, disability, or the way they typically communicate, i.e., whether the person uses natural speech or relies on augmentative and alternative communication (AAC) tools and supports. However, stress-induced loss of speech or language is more common for people with certain disabilities, such as autism, intellectual disability, acquired brain injury, post-traumatic stress disorder, situational mutism, anxiety, schizophrenia, dementia, aphasia, and Parkinson’s disease, among others (Zisk & Dalton  2019, pp. 93-100; Sparrow 2017; Brainline 2012; Viana, Beidel, & Rabian 2009, pp. 57–67; van der Heide, Speckens, Meinders, Rosenthal, Bloem, & Helmich 2021).

The way occasional speech or language loss is experienced depends on the cause, the circumstances, the individual, their disability, and other factors like environment, pain, medication, or cultural background. Here are just a few examples:

• • They feel like the part of their brain that translates thoughts to words has stopped working.
  • They feel like they need more time to process information than they usually do.
  • Their words or thoughts are feeling “jammed” or “stuck,” or they feel like their whole mind has suddenly gone blank. 
  • They feel like their thoughts are going in circles, and they are having trouble with new or different words and ideas. You may know this as perseveration.
  • Their body feels too cold or too heavy to move or control, or they feel frozen; they can’t move their mouth or make noise from their throat, even if they can move other parts of their body. You may know this as catatonia.

Don’t assume that someone has a particular condition or is experiencing a particular phenomenon (such as perseveration or catatonia) just because they describe their symptoms in a particular way. Take the person at their word (if they can communicate with words) and try to see the world through their eyes. Focus on accommodating their disability, making communication possible, and helping them through the stressor; avoid prioritizing or pathologizing the speech/language loss itself. Helping them to regain their usual communication should not be the only goal of your interaction.

HOW CAN I HELP A PERSON WHO IS HAVING TROUBLE COMMUNICATING?

Occasional speech or language loss happens most often when an individual is stressed, upset, in pain, dysregulated, or in a difficult or dangerous situation. Unfortunately, struggling to communicate as usual can make navigating those circumstances much harder, or even impossible. Whether you’re talking someone through an acute mental health crisis, collaborating on a transition plan at the end of an inpatient stay, or calming someone down after an accident, learning about occasional speech or language loss means you’ll be better prepared to offer meaningful support to the members of your community who experience it.

• • Offer your unconditional support. Make sure the individual knows that they don’t have to speak with their mouth in order to be heard, understood, respected, and cared about. Never force someone to speak if they are having trouble, and stand up for them if someone else is trying to coerce or pressure them.

Some people may not realize right away that they’re struggling. If you think someone is having trouble communicating the way they usually do, ask about it. For example: “Would it be easier for you to type, or tell me what you mean in another way?” That said, some people who speak slowly or with effort may still prefer to use speech; likewise, someone typing slowly and with effort may still wish to type. Always honor their choice.

• • Sometimes the answer is as simple as patience, peace, and quiet. Encourage the person to take it slow, and match their pace. Be patient, and recognize that it may take much longer to get words out in a way other than speech. Don’t speak over them, including while they’re typing or otherwise composing their message: wait for them to finish their words before you share yours. Don’t talk to them like they don’t understand or like they can’t hear you. And remember that asking lots of questions can be overwhelming, even if you mean well. Take it one step at a time, and offer the person plenty of space and time to respond in full.
    

• • You might need to get creative to find a way for the person to communicate effectively. Stress can change the access some people have to speech, language, and thought, and even if it’s happened to them before, they may not necessarily have a solution when they reach you. Depending on the individual’s abilities at the moment, you might consider: switching from a phone call to a text-based conversation; encouraging someone to supplement or replace their typed words with emojis if typing is challenging; or offering different methods of responding, like numbered options (“Can you tell me about the sounds around you? Are they (1) too loud? (2) too quiet? or (3) just fine?”) or physical responses (“Nod for yes, shake your head for no, or shrug for I don’t know,” or “Blink once for yes, twice for no, and three times for I don’t know”). When relevant, always give people an option for “something else” so they can still respond even if none of your options fit. For other strategies for enabling effective communication, see the end of this document.
    

• • Never move on until you understand. If you can’t understand someone’s speech or language, don’t pretend that you can. This pretense is usually obvious (and painful). Instead, ask clarifying questions and use the principles of active listening, using phrases like, “It sounds like you’re saying…” or “So what I’m hearing is…” Don’t correct grammar or spelling. If you’re not sure you understand, rephrase what was said and ask if you have it right.

Many people living with disabilities that affect the way they think, feel, and/or express themselves—such as mental illness, intellectual or developmental disability, neurodivergence, brain injury, aphasia, or something else—are acutely sensitive to the pain and isolation of being misunderstood, and many have dealt with it all their lives. Make it clear to the individual that what they have to say matters to you, and that you’re willing to work to understand them.

• • Help them use the coping skills they already have. People living with mental illness often have a few tricks up their sleeve already, but in moments of intense stress, they may need help to remember or figure out what those things are. The first step is often making the person more physically comfortable and improving their sensory environment. Ask what helps and offer examples, like a darker room, music, a screen (like an iPad), total silence, deep pressure (like a weighted blanket, squeezing their own hands, or giving themselves a big hug), or being near an animal. Might they need to take care of body needs like food, water, or the bathroom? Do they need medication for pain or anxiety? Help them find something that will make them feel even a tiny bit better to be in their body. Some individuals may also have a crisis plan, where things like this are already written down.
    

• • Treat them with respect. Whether or not someone has access to speech and/or language, they always have feelings, thoughts, hopes, dreams, ideas, goals, and histories. Treat them as people, with all the rights that entails. Presume competence: never treat them like children, unless they are children (but feel free to ask if using plain language would be helpful). Value them and their lives as important and worthwhile.
    

WHAT IS AAC, AND HOW CAN IT HELP?

AAC stands for Augmentative and Alternative Communication, and it’s an umbrella term for many different strategies and tools that people use to communicate when they can’t use speech. People might use AAC all of the time, most of the time, or episodically, such as when they’re under stress.

Some people who usually have access to speech may believe that they don’t need AAC or don’t have the right to use it, but the truth is that AAC is for anyone and everyone who needs it, no matter when, why, or how often they can’t rely on speech.

Everyone communicates without speech sometimes. Pointing and gesturing is AAC. Making facial expressions is AAC. Typing on a keyboard or a phone is AAC. Using emojis is AAC. 😀 When people aren’t able to rely on speech alone to be heard and understood, specific tools or supports that meet their specific needs may be needed to allow them to communicate effectively. Some of these may be new to you, and may even be new to the individual you’re working with, depending on their past experience with AAC.

Using AAC during episodes of speech or language loss can reduce stress and make it possible to communicate effectively, but it’s usually not a good idea to introduce a new form of AAC when an individual is already stressed. When helping someone find communication solutions, ask them what they’re familiar with: if they’ve never used a letterboard before, a crisis probably isn’t a good time to introduce it, but using emojis may be something they feel comfortable with.

AAC options include:

• • Typing words letter-by-letter on a computer, a tablet, or a smartphone
  • Using an AAC app or software with pre-programmed words and phrases
  • Using emojis or pictures
  • Drawing or writing by hand on a whiteboard, piece of paper, or tablet
  • Using gestures or sign language
  • Letterboards: a rectangle of cardboard or plastic with the letters of the alphabet, and sometimes common words like Yes and No, written on them

When helping people who deal with speech and language loss under stress to develop long-term stress management strategies and coping skills, encourage them to practice using different types of AAC in low-stress conditions. The more familiar a person is with a given AAC tool or support, the more easily they will be able to use it under stress.

That said, be aware that stress can make it difficult to communicate at all, and that includes communicating with AAC. Even full-time AAC users who have used the same AAC support every day for years may find themselves unable to use it if they’re under enough stress. If someone is struggling to communicate with their usual methods of AAC, focus first on reducing immediate sources of stress and helping them to access sources of comfort. Just having a trusted person in the room can make communication possible for some people. Finally, consider trying a different form of AAC, such as pictures or emojis instead of typed words.

WHAT ELSE SHOULD I KNOW?

• • Language matters. Learn more about the language CommunicationFIRST uses and why when talking about people with speech-related disabilities in The Words We Use. Remember, though, that this community is diverse, and not everyone uses the same language to describe themselves. Listen to the person, and use the language they use for themselves.

• • Speech and language loss isn’t anyone’s fault. When someone can’t communicate the way they usually do, they might feel afraid, anxious, upset, guilty, frustrated, angry, or numb. Most people who lose speech or language have gotten reactions like anger, frustration, sadness, or even violence from the people around us. Struggling to communicate the way they normally do is never their fault, and they don’t need to apologize for it. Remember, too, that an individual losing speech or language is not necessarily your fault, either. It’s just one way that bodies and minds can respond to stress.

• • Using AAC isn’t shameful, annoying, or childish. Nobody should feel wrong, bad, or foolish for using AAC, whether they need it for every word or only when they’re stressed. AAC is a way to access communication, just like wheelchairs are a way to access movement, and captions are a way to access sound. AAC is normal, and it can be liberating. Dismissing AAC or treating it as worse or lesser than speech is ableism, plain and simple.

• • Chronic stress—for example, as a result of ableism, abuse, poverty, or racism—is stress, too. All stress takes a toll on bodies and minds, and it can show up in lots of ways, some unexpected. Even if the individual is used to the chronic stress they experience or doesn’t feel very emotionally affected by it, it can still cause speech or language loss. There’s a lot of chronically stressful situations an individual can’t change on their own, so remember that reducing stress isn’t always an option. But understanding the source of the stress—and having safe spaces to talk about it—can help make things easier, and can help the person to better understand their communication barriers.

• • Know that some people never have access to speech as a reliable form of communication. The advice in this guide is equally applicable to anyone who needs AAC tools or supports to communicate, whether that’s full-time, sometimes, or only occasionally. However, be aware that full-time AAC users are disproportionately exposed to dehumanization, neglect, and abuse from both authority figures and peers, and their experiences with speech and language disability may be very different from people who can sometimes speak. Respect and listen to the individual, and honor their communication and experience.

MORE STRATEGIES FOR EFFECTIVE COMMUNICATION

• • Patient-Provider Communication’s repository of free communication boards
  • More free “low-tech” AAC resources for adults
  • Tactus Therapy’s word-finding strategies for aphasia (may be helpful to anyone who struggles with word-finding)
  • Tips for communication with people with aphasia (may be more broadly applicable)
  • Assessing and managing communication needs in people with serious mental illness (peer-reviewed; paywalled)

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