Understanding Aphasia: Tools, Consent, And Real-World Communication

Words don’t just disappear; sometimes the path to them does. We explore what aphasia really is—evidence of brain injury—and why that framing changes everything for survivors, caregivers, and clinicians. Instead of waiting at a broken bridge, we focus on building new routes: consent-based support, yes/no prompts, two-choice options, functional descriptions, and shared signals that turn help into partnership. The result is less pressure, more access, and conversations that actually include the person who’s fighting to be heard.

We also dig into the messy truth of inconsistency. On one day, automatic phrases might show up on cue; on another, a simple sentence can stall. That doesn’t mean the thought is gone. Capacity rises and falls with fatigue, stress, speed, and noise. The wardrobe analogy makes it clear: the clothes are there, the drawers are jammed. So we shift the goal from perfect words to being understood—reframing success as clear meaning, not flawless speech. Along the way, we talk about when “take your time” helps and when it hurts, and how a quick reset like “let me say it another way” can unlock progress.

Caregivers and clinicians will find pragmatic guidance for protecting dignity while improving outcomes: pace the exchange, reduce choices, offer help with consent, and respect “never mind” as triage, not attitude. We name the emotional weight too—grief and depression that often travel with aphasia—and offer a way forward grounded in partnership. If you suspect aphasia after a stroke or head injury, seek an evaluation and bring these tools to your team. Subscribe, share this with someone who needs it, and leave a review to help more people find the conversation. Your support keeps this work moving and makes the path to language a little smoother for everyone.

www.aphasiaadvocates.com for Brain Friends Merch

https://www.cognitiverecoverylab.com/seles

https://aphasia.org/stories/announcing-the-davetrina-seles-gadson-health-equity-grant-program/

Our beloved colleague, Dr. Davetrina Seles Gadson, passed away January 11, 2025. Dr. Gadson was an extraordinary speech-language pathologist and neuroscience researcher who devoted her energy to studying health disparities in aphasia recovery. She was a fierce advocate for improving services for individuals with aphasia, particularly Black Americans. Her research transformed our understanding of these health disparities and shed light on how we can address them. We were privileged to have Dr. Gadson as a cherished member of our lab community for four years, first as a postdoctoral fellow and then as an Instructor of Rehabilitation Medicine. She was still a close collaborator and friend to many of us at the time of her passing. Dr. Gadson was an incredible person—compassionate, inspiring, and full of life. Her dedication to advancing equity in aphasia recovery and her profound impact on our community will never be forgotten. We are committed to honoring her memory by continuing to push our field forward and fight for equitable services for all people with aphasia.

Chapters

• 0:00 Solo Host, Mission, And Milestones
• 2:05 Grief, Showing Up, And Community
• 2:05 Support The Show: Aphasia Advocates
• 6:11 Is Aphasia The Same As Brain Injury
• 8:31 How To Explain Aphasia Clearly
• 8:38 Is “Take Your Time” Helpful
• 14:11 Practical Reroute Strategies That Work
• 18:23 Consent, Partnership, And Shared Signals
• 19:22 Knowing The Words But Getting Stuck
• 22:21 The Wardrobe Analogy For Access
• 25:36 Aim To Be Understood, Not Perfect
• 28:16 What People Should Know About Aphasia
• 31:08 Automatic Speech And Capacity Limits
• 34:20 Caregivers: Timing Over Pressure

Transcript

SPEAKER_01: 0:04

Hey, brain friends. All right. So in this episode, I'm going to be answering four key questions. Four questions I had myself that I see all over the internet where people are asking um things like, is aphasia the same as a brain injury? Uh number two, is take your time actually helpful or are we getting it wrong? Number three, why do I know exactly what I want to say, but I can't get it out? Is this aphasia? And number four, what do I what do I wish people understood about aphasia? Wow. So this is how we're starting off on this episode. Um this now, this episode is also going to be a little different. This is my first true solo episode. It's just me on the mic. So bear with me. Talk to me nice. I'm also using the new editing software. So if you hear a glitch or something's just a little off, I heard it too. And I've decided uh for the sake of everything, I'm rolling with progression over perfection. Okay. Progression over perfection. That's been my motto that will have to be how it's going down. That's what I gotta do. So um it's been really hard. My grieving of my partner, Dr. Dave Trina Celeste Ganson, is um that water was just deeper than I thought. And showing up in this space has been harder than I thought. So um some of it I had to just I have to press record and make it happen. So, oh, if you want to support the show or just wear something cool, check out aphasiaadvocates.com. We got Brain Friends the Podcast Gear. I got that two Neural Nerds Limited Edition Long Sleeve T. Um, so go check out the store and support the show, please. This is season three. We have listeners in over 90 countries, and we have 1200, 12, one, two, one, twelve thousand downloads in over 90 countries. So thank you for that, and we're gonna keep this conversation moving because this podcast matters, this science matters, lived experience, and patient reported outcomes come through. So less, they still matter, and I hear my partner in my ear. Girl, if you don't get on this mic and stop playing with me, so we're gonna get into it. Um, and um, yeah. Welcome to Brain Friends.

SPEAKER_00: 3:16

Let's get it. Welcome to Brain Friends, where two neuronerds talk all things aphasia, language recovery, culture, and community. I am Dr. Datrina Celeste Gatson, a clinical speech language pathologist and neuroscientist.

SPEAKER_01: 3:34

And I am Angie Cawthorn, stroke survivor and aphasia advocate.

SPEAKER_00: 3:40

Welcome to our show. Welcome to Brain Friends. We want to thank all of our listeners for downloading the podcast. We appreciate everyone listening. So please tell a friend to tell a friend that we are here. And we are.

SPEAKER_01: 6:11

Shyness, it's not stress, it's brain damage that shows up through language. One thing I wish people understood is that aphasia doesn't stay neatly inside the category of language is woven into everything you can access. It affects decision making, problem solving, reading and writing, following directions, doing things in sequence, advocating for yourself. I also remember realizing and saying that brain injury, or sh I used to call it stroke brain, because it felt safer for people to hear that rather than saying aphasia, because brain injury sounds medical, it sounds serious. It's something that is tangible. Aphasia, on the other hand, f sounds unfamiliar, people don't know what it is. So people tend to minimize it. They hear communication problem and think inconvenience. But aphasia is not an inconvenience, it's a neurological condition that changes how you move through the world. So when people ask me now, is aphasia the same as a brain injury? My answer is this aphasia is evidence of a brain injury. It is one way the brain damage shows itself. It deserves to be understood, studied with the same gravity as any p other post-stroke condition. So when someone tells you or you have to tell someone that they have aphasia, remember that you're telling them about a fundamental change in their brain that has happened. So when you're explaining it, explain it clearly and give the steps. Those steps would be you've had a stroke, because of the stroke, you have brain damage. That brain damage is called aphasia, and that's why you're having a problem speaking. Those four steps I think would make a huge difference because a lot of times we hear the word aphasia and we don't know what to do with that word. First of all, I've never heard the word. Alright, so the next question is Is take your time actually helpful? Or are we getting it wrong? When I saw this question, first of all, I loved the question. I was having a conversation with somebody, and for me, it would feel like the words would hit a wall. There would just be walls popping up. Um, or different words that I didn't want would just be injecting themselves. Uh both things kind of would happen at different times depending upon the situation. But either way, they would say, someone would say, take your time, take your time. I don't need time. I need a reroute. Like, I hit a wall, and it always you could always feel the room kind of shift. The soft eyes, the patient nod, the gentle tone, right? And you know, people would shift into that familiar posture, and again hit you with the take your time. But the thing is, you can stand at a broken bridge all day, right? I don't need it's not that I need time, I need a way to get around it. The problem is take your time is a waiting strategy, and a phasia often requires a rerouting strategy. If the issue were speed, if the word was simply slow to arrive, then yeah, sure, taking your time would be the answer. But a phaser ain't just slow, it's more likely blocked. Um, and what is happening in that moment was not a delay. Sometimes this is traffic jam, and sometimes you can get through. But more than not, that bridge is out. But in the meantime, in this conversation, I just need to reroute. So that's why take your time can feel like a mismatch. It's kind and I appreciate it, but it's often incomplete and leaving me feeling like there's a spotlight on me because it's a sneaky pressure that kind of comes in with that because now everybody's waiting on me to try to communicate whatever this blockage is that I didn't know I was gonna run into. Because the most nefarious the hard thing about aphasia is the words being there and then all of a sudden being ripped from you. Those words are there, what you want to say, and you think you can say them until you get to word five, right? At least that would what it was for me. Also, when you say take your time, it makes me aware that everybody is now watching me trying to find a word, and that social pressure makes the brain's job harder. So I appreciate it, I get what you're saying, and it's not always wrong, but it's often just not enough. Now there are times where take your time can be helpful when a person really wants quiet, like a quiet space, that's when it's helpful, when they're close to a word and they feel like just give me a minute, they'll tell you. There is a time where a person can tell me, I can say, you know, take your time, I'm taking my time. Sounds can be supportive. But here's when take your time is usually not helpful, is when a person is stuck behind that brick wall. When the word isn't coming, no matter how long you wait, and the person starts spiraling into frustration when the conversation is moving fast and they're being left behind, and those moments, waiting isn't support, it's just waiting. So what do we do instead? Instead of offering time, perhaps offer tools. There are some better options, simple, practical, and respectful. Ask the person do they want help? This is something that I've always been really, really good at or receptive to. Okay, I don't need more time, I need a life preserver, right? My fellow Ephasians have told me in many a time they would rather you wait and let them ask you for help if they need it, but they would rather kind of wait it out in some cases. Two options, not five options, two options. Is it a place? Yes or no is powerful because it reduces demand and guides access. Invite a description, tell me what it does. Can you describe it? This keeps the meaning moving even if the label is stuck. Like it allows the person to you're engaging with me rather than waiting on me to produce this one thing that I do not have access to, but you're giving me ways to work around it to get to that one thing. Also, what worked for me was offer me a reset. Start over, I'm with you. Just take your time, and that's when take your time is okay. It gives permission to reroute without embarrassment. Ask what kind of help the person wants. This is the most respectful of all. Do you want me to wait or do you want help? That question changes everything because it stops support from being accidental. It turns support into partnership, and partnership is what people with aphasia deserve and want. I also want to say this plainly: finishing someone's sentence is not automatically rude. It's only rude if it's not agreed upon. Like I said, I love it. But there are others that are not fond of it. But consent, the key is consent. You don't guess, you ask. If you're supporting someone with aphasia, the best thing you can do is create a shared system. A signal for help me, a signal for I ain't talking no more. So if you're a person with aphasia listening, it's okay to coach your people on what's gonna work for you in this particular season that you're in. And aphasia is a moving target. You're getting better every day, you're getting access to words every day, even when it feels like you're not. I promise you, you are. It's okay to say, don't tell me to take my time, help me reroute, help me reroute this thing. Tell them, ask me yes or no questions, or whatever it is, it's gonna work for you. But that's self-advocacy. So are we getting it wrong? Sometimes, but that's not intentional. But because it's not intentional doesn't make it good. You just didn't mean to do it. Access is the difference between being present in the conversation and being left standing at the wall. Access is key, guys. Time is kind, but strategy is access. Why do I know exactly what I want to say but can't get it out? Is this aphasia? I remember one time I had a story in my head, clear as day. I was talking to Tay, and she had asked me a question. We were in the house chatting it up, and I had spoken at a conference, Aphasia Access, and she told me to tell her about what had happened. So I went to go tell her, and prior to that, we were talking the way I'm talking to you right now, and all of a sudden, when I opened my mouth, it was like I hit a brick wall. The more I pushed, the more it disappeared. That experience is one of the most misunderstood parts of aphasia, the inconsistency of it. But to answer the question, yes, that can be aphasia, especially if it happened after a stroke, a brain injury, or a neurological event. But even without a known event, it's something that you should take seriously and get evaluated. But here's what's happening in plain language, the best I can explain it. Again, I am not the smart one. So you can have an idea fully formed, but the brain has trouble with one of the steps that turns that idea into spoken word. As I understand it, communication is not one step, it's like a chain. It's like the idea, the words, the motor plan, the sounds, and then that speech output. Aphasia disrupts steps two and three, you know, finding the words and assembling them. And another related issue that I also suffered with was a praxia of speech, which can disrupt like step four, which is the planning of mouth movements. So, like I would go to say the word compass and my jaws would not do what I needed it to do. I found out different from the gymnastics that was going on in my head to say words at a different time. So I would say I don't suffer with apraxia in the same way I still suffer with phasia at this point. All right, so anyway, if you're reaching for what aphasia can look like if you're not sure of what you're feeling or what you're going through, if you're reaching for a word and it won't come, that's the word finding. If you substitute um knife for fork, if you know the first sound of a word but can't finish it, like you see it, you know it, you know how to use it. But oh, you can say it later on a different context, but not on demand, that's a big one. And it gets worse when you're tired, stressed, or rushed. So So the last point matters. Aphasia symptoms all often fluctuate. People assume inconsistency means you're fine or not trying. No, your brain is doing triage. When the system is overloaded, language becomes the first thing to go. I don't make the rules, guys. I just know what they are. So, um, you know, the thought didn't disappear. That's the part that people don't really truly get. The story, your story is still there, still running intact and waiting. But the path in the my brain and my mouth are blocked, jammed, construction, it's unaccessible. And people did what people do when they care. They lean in, they smile, they say it's okay, tinker time. I've already discussed that, so we're not gonna be that horse. But you know, again, time is not what we needed. Um, we could sit there for 10 minutes and still been staring at the same wall. And that's when I understood something that it took years to put words. Aphasia isn't about knowing, it's about access. I knew what I wanted to say, I just couldn't reach the way I used to. The best way I can explain it is in my wardrobe analogy. I'm calling dibs on it. It's mine. I made it up. It's a whole thing. I wrote it down when I first had my stroke. Okay, so here we go. Alright, y'all ready? You ready? Here we go. It's like standing in front of your wardrobe where all your clothes still exist. Every outfit, but all the drawers are jammed. Some won't open at all, some open halfway and get stuck and require way more effort than it should. You don't suddenly own fewer clothes, you're just fighting the furniture, and that's what aphasia feels like. When people say take your time, they're really assuming is that if you wait long enough, the drawers will magically slide open, and that the word is late, it's on its way, just around the corner, just give it some time. But aphasia doesn't work like that. Sometimes the drawer is stuck, whether you wait or not, and I always remember realizing that the block wasn't always the word itself, sometimes it was decision around the word, the this or that, the nuance of holding an idea in my head while deciding what to do or how to frame the next one. Those cognitive nuances are the things that used to feel automatic, started to feel real foreign. It's like my verbal GPS stopped working. I'd have a sentence, I knew where I wanted to end up, and suddenly I had to route recalculating. And recalculating again. And then, you know, no reroute is offered, no alternate plan suggested. And that's when I stopped trying to push through. Because pushing just made it worse. What helped was changing the goal. I had to stop Amy for a perfect word. I had to start Amy for being understood. I remember one time Celeste asked me, she says, when you're talking, because I was talking pretty choppy, and she was like, Is that a successful completion to you? Just getting your point across, or do you want it to be perfect? And I'm like, perfect? Nah, that's not even if I was aiming for perfect, I'd be in the corner, crying my eyes out, because that's not gonna happen. Aiming to be understood was the goal that really did help. If the word wouldn't come, I described it. I was very good at making analogies, and if the sentence structure collapsed, I changed the structure. If the whole story jammed, I backed out and I started from a different angle. And sometimes, and this is important, I let other people help me navigate. I learned to say, hold on, let me say it another way. And that was me directing the support, and kind of like I just said in that other answer, when someone has aphasia, get stuck mid-sentence, they're not lost, they're not confused, they're not unintelligent. They're standing in front of a locked door holding a key, trying to figure out which lock is the lock. So when you see someone pause, when you hear the sentence break, when the words come out all sideways, don't assume the thought is gone. I assure you, the it's probably really right there. But the point is, if you think you have aphasia, right, and you have bad word finding, and you don't know why, you need to get that checked out. That's what you need to take with you. Alright. On to the next one. See, this is what happens when Celeste is in here. See, this is this is what I'm saying. Like, again, the inappropriateness will be on the podcast. I don't I don't know what to tell you guys. Alright, so here we go. Okay, so what I wish people understood about aphasia. Aphasia isn't just about talking, it touches speaking, understanding, reading, writing, math. Um, my math has not been mathed for years. I used to read all the time. I cannot take down a decent paragraph or two. I get through the first paragraph maybe, or half a paragraph, but first couple of sentences, and then it becomes mush. I see the words, I read the words, I can't connect them to the next word. I don't have what's required to make it glue. That's how it feels to have aphasia. Or one of the things I wish people knew about it. It touches all of those things of the cognitive side, plus the energy it takes to do all of that. Some days you've got more access, some days you've got less. And that fluctuation is real. It's not inconsistency, it is capacity. Also, um automatic speech task is real. Dr. Celeste taught me what uh automatic speech task was, counting the ten, saying the alphabet, which is why they asked you to say the alphabet in speech therapy to see how these automatic or the days of the week. Um I lost ability to do those type of things. I remember being in therapy. Why are you asking me to say the alphabet? I felt like she was just not being a nice lady. And then terms to find out I couldn't get past the letter D. It's a very humbling situation. But anyway, um automatic speech tests is real. One minute, I might be able to say, hey, how you doing? Or I'm fine, or a familiar line like Angie's awesome, or rattle off a phrase I've said a thousand times. But the automatic speech, the brain can sometimes grab those well-worn out roots. But when you ask me a fresh question, like tell me what happened at the appointment, suddenly it looks like I shut down. I didn't shut down. So please don't use automatic speech as proof that a person is fine. It's proof that my brain has some paths that still work and other paths that are under construction. Never mind is not attitude, it's triage. Another thing, when a person starts a sentence and they stop and they keep and they try, and then they just say, Never mind. Let them say never mind. And here's why. That's not them being difficult, that's a person hitting too many brick walls at once. It would be better to say that's okay, we'll come back later. That's more helpful than say it now. I know you can say it, you said it earlier. That's not helping. You know, you want to pause and come back? Do you want some choices? But realize that when a person stops, it's you pushing is not helping because again, we don't need time, we need a reroute. Or we might need time of just not talking about that no more. I might be at my capacity for what I can do. To my caregivers, love isn't enough. Timing matters. So, like I was saying, I talk to a lot of well-meaning caregivers, and they start answering for the survivors or keep pushing the survivor to answer past their capacity, and I get that the caregivers tired, they want their person to do well, they're trying to help, they hate watching their folks struggle, but here's the flat truth. Like I said, pushing past capacity can just make it worse. It can increase stress, increase the shutdown, and leave the survivor smelling feeling small. Aphasia doesn't need a drill sergeant, aphasia needs a partner. The goal is not to get it out at all costs, the goal is to communicate and to be understood. That's the goal. And the goal is also to protect communication, and sometimes that includes knowing when to stop, sometimes just to take a break, come back later. Because the brain has a limit, and when you hit it, everything gets harder. Aphasia can bring depression along for the ride, it's a squatter. We'll be honest about the emotional part. Aphasia can be exhausting and isolating, stroke and aphasia, TBI, AVM. These things will take things from you you did not even realize were up for grabs. And that grief is real. That depression can be part of that journey. Not because somebody's weak or they're losing access to words and it can feel like losing access to your life, but because everything has changed in an instant, and you went from capable to incapable in the blink of an eye. So what I wish people understood is this if someone is with aphasia is quiet, it might not be that they don't want to talk, it might be they're protecting themselves from failing out loud again. Alright, so the bottom line is aphasia is not laziness, it's not stubbornness, it's not if you can say one thing, you can say everything. You said that yesterday. I mean, now you act like you can't talk. Um it's a neurological communication disorder that requires patience without pressure, support without taking over, and respect without assumptions. If you want to help, don't make the person perform. What I mean by that is make environments safer, make options wider, and again, when they say never mind, don't take it personal. Sometimes the most supportive thing you can say is we can try later. All right, that's what I got for you on the four questions that I decided to answer in this episode. Hope you guys learned something. Hope I was helpful doing all the things. Alright, green friends. That's where we're gonna leave it today. If any of these questions hit home, good. That means you're paying attention. Aphasia isn't just clinical definitions or checking a box on a chart. It's lived, it's layered, and it's showing up differently depending upon the day, the fatigue, and the environment. My goal with this episode wasn't to oversimplifly, but it was to make it clearer. So if you're a survivor listening, I see you. If you're a caregiver, thank you for trying to understand rather than rushing the process. And if you're a clinician or a researcher, first of all, you should be sharing this with people, okay? If you're a researcher or a clinician, like what are we doing? Okay, I hope this adds context to your work and that and to the work that you're already doing, and that you are obviously sharing this with your clients and your students. Hello, look it up. What are we doing here, people? Season three looks a little different for me, but the mission has not changed. We're still about real conversations, real science, and real respect for lived experience. I'm glad you're here, and I appreciate you rocking with me as I keep moving forward. As always, take what you need, leave what you don't, and come back when you're ready. This is Spring Friends the podcast. I'll catch you next time. Peace y'all.

SPEAKER_00: 34:19

We hope you enjoyed this episode of Brain Friends. Please leave us a five-star review on Apple Podcasts or your favorite streaming platforms. Also, make sure you subscribe to our YouTube channel.

SPEAKER_01: 34:32

Brain Friends the Podcast.