Episode 296: Otto Lana: Autistic Advocate, Writer, Actor, and AAC User

This week, Chris and Rachel interview Otto Lana (@otto_types), an autistic advocate who uses multiple modalities, including AAC, to communicate. Otto is also an intern at Kindred Communication (gokindred.com), which specializes in providing speech, language, and AAC coaching services. Otto shares about his AAC journey, why he believes literacy and typing skills need to be more emphasized for AAC users, his preference for positive instead of neutral or negative terms (i.e. nonspeaking) to refer to people with complex communication needs, and more!

Before the interview, Chris and Rachel banter (in the same room!) about how they try to keep an open mind when dealing with information that doesn’t agree with what they have heard before, and how that approach helps them stay current with many of the changes in the field over the years.

Key ideas this week:

🔑 If a person requires a wheelchair, are they called non walking? If a person has prosthetics, are they called non legged? Otto prefers “individuals with complex communication needs” or “multi-modality communicators.” Otto says the prefix “non” is negative. He wants to focus on positive or neutral terms, because “using deficit terms is derogatory and degrading.”

🔑 Otto believes that AAC systems that do not include a keyboard are “electronic PECS” because they are typically used to request and the words are predetermined by the adults in the room.

🔑 Otto says “Communication is a basic human right, and freedom of expression is a First Amendment right, but teaching civil rights or constitutional rights to special ed students doesn’t happen. If it did, there would be a whole new level of protesting” about how these students are treated.

🔑 Otto says to AAC users everywhere, “Don’t give up, it is hard work. Find friends who also use AAC. Be patient, be positive, trust in the process - you can do it!”

Links from this week’s episode:

Otto’s website - ottosmottos.com

Kindred Communication - gokindred.com

Recent article about Otto: https://canvasrebel.com/meet-otto-lana/ 

Transcript of the Episode

Please Note: This transcript was generated using speech recognition & AI tools; it may contain some grammatical and/or spelling errors.

00:00:08
Welcome to the Talking To Tech podcast. Here I am sitting on the couch next to Rachel Madel because we're in person together.

00:00:15
I know we're in Boston, Chris I.

00:00:17
Think the last time we recorded in person. You were in my car. You were visiting in Virginia and do you remember we saw that it was like a Turkey on the side of the road, yes?

00:00:28
That's right.

00:00:29
Also, we like crushed so many podcast banters in that car ride we.

00:00:33
Did they were really good, Really good. We're in person, we can actually see each other and and here we are again because we're about to present tomorrow our coaching talk, which fun fact, that was the first thing you and I ever presented together. It was at Asha 2021 and here we are at Asha 2023.

00:00:52
That feels insane, Chris, because we've done so many in person speaking events since then and I think that was also the second time we'd ever met in real life, yeah.

00:01:02
For sure.

00:01:03
For sure it's crazy.

00:01:04
Wow, that's great. So here we are today. Tomorrow is when we're actually going to the conference. Are you looking forward to to the conference?

00:01:12
Yeah, I'm excited. There's a lot, a lot of people here that I want to see, a lot of presentations I'm excited to go to. Of course I'm excited to present with you just because I love presenting with you and also I love talking about coaching. So really pumped to see who's there. And it's just like a fun energy.

00:01:27
I feel like at Asha and a lot of people are kind of there that I haven't seen in a while. And it's just nice to make connections with people in real life because often times we're just connecting through, you know, social media and like, you know, online channels. And so it's nice to actually be in person with people.

00:01:41
Yeah, yeah, for sure. Seeing people in person who are like your extended family, it's just like, great to catch up, right? I mean, actually like us, we don't get to see each other in person very often either. But the other underlying reason why you go to a conference is to learn stuff, right? And so in order to learn stuff, you got to have an open mind to say, OK, what's some information I don't yet know or what's something I think I think I know.

00:02:04
And then maybe go to a session and have your mind open to, Oh my my God, my gosh, I didn't know. I didn't think of it that way before. Or right. Is that fairway to look at going to a conference?

00:02:17
Yeah, I think that, you know, for me, professionally, I'm always eager to get new ideas and there's no shortage of new ideas, which is awesome that we're living in a time where information is shared so quickly and easily. And I'm really just always curious. I've been very hungry for information. That's definitely part of who I am as a person and definitely as a clinician. And I'm excited to, you know, hear people's ideas and then figure out how I can start incorporating some of them into my clinical practice and seeing kind of how it goes.

00:02:50
I know early in my career when I was learning new stuff from like Graduate School and then I'd go to a conference and learn or hear something that maybe challenged my beliefs, my, my or what I had previously learned. I felt real, this cognitive dissonance, right like this stretch in my brain, like, but that goes against what I Someone told me something 1st and now I am learning something different and I here I am. I'm closing in on my 50th birthday, Rachel. So I have made plenty of mistakes that way. And so let me ask you as when you come to a conference like this, how do you reconcile keeping an open mind to learning new stuff?

00:03:29
I mean, I definitely am in similar situations to you, Chris. I've had things that I was doing in my clinical practice that I then realized, like, oh, maybe I shouldn't be doing this. And it definitely feels really uncomfortable at first, especially when you're doing it for the first time. I feel like as I grown and learned as a clinician, I start thinking about new ideas and I'm a lot more open now than I used to be. But there's definitely some discomfort in thinking, oh, I wasn't doing that the way that I should have, or maybe I was doing it wrong.

00:04:00
And it's been definitely an evolution for me and figuring out how to navigate those spaces. But I am really, I'm really excited to say that. I feel like that's one of the things that makes me, the clinician that I am, is that I really am open to new ideas. And I feel like I I have to experience something before I can, you know, say that it works or conversely, say that it doesn't work. And so if someone has a new idea, I'm like great, like, let me try it out, let me think about it, let me, you know, ponder this, let me give it a whirl.

00:04:32
And that's kind of how I operate. And I've had a lot of success in that. And it's definitely helped me evolve my practice. And it definitely keeps you kind of more cutting edge. I think as a clinician and as an educator, just being kind of open to new ideas I think is a really important thing just in life.

00:04:50
But also, you know, when we're thinking about how we're progressing ourselves professionally.

00:04:55
Can you think of any specific example where you thought you knew something and then you learned something and said now I'm going to do something different? While you think of that, I can think of one because I my one is clearly yes, no, right. Like back in the day it was teach yes no and put that on two buttons and then now I would never start with yes no.

00:05:17
I would never start with questions we already asked you.

00:05:20
Too many questions.

00:05:21
I mean I think similarly similarly to you, when.

00:05:25
I was first starting.

00:05:26
Off with the AEC, I was like, oh, less words is better. Let's get really good at just two words. And then once we get really good at two, we get at 3:00 and 4:00. And I had this idea that we needed mastery of these words before we got gave access to more words. And then I quickly realized that that was wrong.

00:05:47
That is incorrect.

00:05:48
I did that too. Even once I learned about robust language, I was like, OK, we're going to teach this girl drink, and so you just focus on drinking. Once she's mastered drink, then we'll move on to other what? Like, I would never do that now, but in order to make that move, I feel like you need to have a mindset of and maybe some experiences of keeping an open mind and realizing, maybe asking this question, what if I'm wrong? Like I'm mostly right?

00:06:12
I feel like I've I've got a solid foundation, but there's this. I think a healthy thing to ask is what if I'm wrong?

00:06:19
Absolutely. And I think that if we're constantly having a little bit of reflection with ourselves and we're open to new ideas, that keeps us from getting stuck in this kind of complacency of, well, this is the way I learned it. This is the way I do it. This is the way I'm always going to do it, which, like, that's not the way the world works. Like, we evolve and technology evolves and practices evolve.

00:06:45
And the more, you know, we do something, the more we learn about it and the more information we get. And so, you know, in order to really stay current, you have to really challenge yourself, even though it feels uncomfortable. Yeah.

00:06:59
In my own mind, the way I try and reconcile that it's sort of like a rule of my life. I think rules are tougher. Guide a guide is the 8020 rule when we say 8080% core and 20% fringe. Let's teach at that ratio. How many other things in life does that just work for?

00:07:15
Like, I'm 80% confident about whatever this theory is or this framework is, and I'm going to keep a 20% open mind to what if there's a better way or a different way, or what if there's a way that I can expand upon that framework, And that served me pretty well over the years.

00:07:31
Yeah, I definitely think that's true. I was like, I immediately started thinking about, like diet was like 80% of the time I don't eat dessert, but 20% of the time I do. I don't know why my brain went there. But yeah, I mean, I think generally speaking, like, you know, how?

00:07:46
Often is it in.

00:07:47
In life that things are completely black and white, it's never, it's hardly ever 100% right. There's always this Gray area. And I think when we're thinking about 8020, what we're really saying is that it's not black and white. There is some Gray. And so like really being on top of that and really thinking through that balance, I think makes a lot of sense.

00:08:08
Yeah.

00:08:10
And so many people, I think, in life in general, but also more specifically in our profession of speech, language, pathology, but maybe other professions as well, want to put things in a black or white box. And that's all it is when there's so much more richness in the idea that life is a spectrum.

00:08:30
But you know, what you need in order to live in that Gray zone is you need to let go of control, right. And I think that that's partially what happens is like, well, we want it has to be one or the other because that, like, simplifies it and makes it super easy for us. And either we're doing it or we're not doing it, Right. And I feel like living in that Gray zone is living in somewhat of an unknown world that's unpredictable, and that's always changing. And I think that that's why people kind of cling on to this black or white thinking, because they're really afraid of being in this unknown, this like unpredictable, like human beings.

00:09:03
We want, like safety, security, predictability, you know, all those things. And being in the unknown is also being in a space where we're not sure. And I think that that might be why some people don't like it there, which is.

00:09:14
Maybe why I love that 80 from 20%, Like 80% secure. Safe with 20% of. Yeah, adventure. Yeah, adventure. Exactly, exactly.

00:09:24
OK, so that brings us to our interview today. So do you want to tell us how our interview got started?

00:09:28
Yeah, so Otto Lana reached out and is actually local in Southern California and San Diego, and we got Connected 1st through Instagram and he has a really fun Instagram account and really has been such a such a proponent of my work. He is on my e-mail list and will reach out when I send emails and he's doing a lot of work in advocacy for AAC users. And so, you know, we invited him on the podcast and we had the pleasure of interviewing him and listening to all of his experiences as an AAC user. And it was a really awesome interview.

00:10:03
Something else to know about Otto is that Otto is a proponent of spelling to communicate.

00:10:08
So.

00:10:08
Otto was denied access.

00:10:09
To robust AAC and then eventually he had access and is now using pro loquote for text.

00:10:15
Enjoy the interview with Otto Lana.

00:10:27
We'd like to thank all of.

00:10:28
The wonderful Patreon supporters who make this show possible. This podcast is funded by listeners just like you who signed up at patreon.com\ Talking with Tech to show their support because of the generosity of our amazing Patreon community.

00:10:41
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00:10:43
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00:10:45
Who keep the show?

00:10:46
Looking and sounding great, Patreon supporters also receive bonus content.

00:10:50
Such as Early Access?

00:10:51
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00:11:01
Now let's head.

00:11:01
Back into the episode, welcome to talking with Tech. I'm Your host Rachel Maddow, joined by Chris Bouget and Otto Lana. Super excited to have you here, Otto.

00:11:19
Hello everyone, Thank you Rachel for the introduction and inviting me to your podcast. Although I think I invited myself, truth be told, I am not Rolana. I am 18 years old. I live in sunny Southern California. My pronouns are here in him.

00:11:41
I am a Latin male with lightly tanned complexion and a smattering of Sunkist freckles on my face. I have short brown hair. I wear my hair gelled back. I have dreamy blue eyes and a bright, inviting, irresistible smile. I am a high school senior.

00:12:03
I am a motivational speaker. I am an advocate. I am the reigning king of inclusion in my Kingdom, not a nation. I am an entrepreneur and have a thriving e-commerce business. I am an intern at Kindred Communication as well.

00:12:21
I want to plug this business real quick. Www.okindred.com Without Darlene Hanson, the speech therapist, I would not have this life or this current level of success. She taught me to type. This is paramount for your listeners and their families to understand. Without letters, without words, I would not have this wonderful life like the royalty that I am.

00:12:52
I was Born This Way. I was born neuro diverse. This community, our community needs outspoken leaders like me. I use a quality letter board you can find it on my website www.autosmotos.com and I use the software Grow low Grow for text. I have chosen the Australian accent because that is the coolest accent and I'm probably one of the coolest AAC users you will ever meet.

00:13:30
I'm happy you answered the question about the Australian accent Otto, because I was wondering. I was like, interesting, but I love it.

00:13:40
So, Otto, you're not from Australia, right?

00:14:01
No, but I'm cool like an Aussie.

00:14:06
Awesome, Awesome. Well, all right. Let me ask you next question. I heard you say that you use a QWERTY letter board and that you use Proloquo for text. How were you first introduced to AAC and how has it helped you?

00:14:21
Let's be clear, I have had AAC since I was 4. I had a guy in a box and an old chat and a tango. But it was not until I was nearly 10 years old that I was given 26 letters. Those other devices were used as electronic pegs. There were picture icons with the robotic voice simulation used to request items or activities predetermined by the adults in the room.

00:14:53
I had no agency and was not presumed competent. But with 26 letters I could speak my truth. Let us create words, and words create worlds. I now had the tools to have a future.

00:15:12
Awesome, Otto. Thank you for sharing that because I think.

00:15:14
That we're a big.

00:15:15
Proponent of literacy in AAC on this podcast and I think that often times we hear stories similar to yours in that you know there was not the presumption of potential for our students with complex communication needs, especially when we have students who are non speaking. So I'm really happy to hear you know all about your experience and you know you had were given access it sounds like to a symbol based system initially. So can you talk about, you know the difference between the icon based system and typing for you? And you know you obviously chose typing over the icon based system and you're using Proloquo for text, so you keep. Can you talk a little bit about that preference?

00:16:16
Thank you for saying students. They're not kilos. Icons are clunky and they're just inadequate. The icon based system is startling and stagnant. I have a lot to say and the particular way I want to say it.

00:16:38
There are 100 kinds of cereal and fifty kinds of Mr. Why would someone think a cartoony drawing of a yellow bottle or a rectangle box with a bow on it be acceptable? Communication is a basic human right, and freedom of expression is the First Amendment right. But then no one is teaching civil rights or constitutional rights in special education. If they did, there would be a whole new level of protesting.

00:17:18
We thought you had met, had something more to say. We can keep going. We're trying to to read your non verbal cues, OK? So you know you have the experience of using Proloquo for text and having the ability to do a lot of motivational kind of speaking events and things like that. What advice would you give to either AAC users or autistic adults?

00:17:46
Parents of children who?

00:17:48
Use AAC.

00:17:49
Like, what's your best kind of piece of advice there for people who are maybe just getting started with AAC or feeling, you know, maybe like they're stuck?

00:18:04
Don't give up. It is hard work. Find friends who also use AAC. Be patient. Be positive.

00:18:16
Trust in the process. You can do it.

00:18:22
This sounds like good advice for almost anybody and anything learning. You know, find your people, find your community, Know that you're not alone, Work together, Don't give up. Know that it'll be hard right? That that works in on so many so many levels. You know Otto you were talking earlier about how you were were not a fan of icons and how ultimately they might be limiting right?

00:18:49
Can you talk a little about about some other terms like the term non verbal and non speaking and what challenges you have with those that terminology?

00:19:01
Non speaking versus non verbal? How about none of the above? The composer requires a wheelchair. Are they called non walking? If a person has prosthetics, are they called non legged?

00:19:15
Maybe we could start a wave where we call ourselves individuals with complex communication needs or multi modality communicators. The non prefix is akin to none, nothing worthless. So let's focus on the positive or neutral terms. Using definitely terms is derogatory and devise them. You can call me out through the music.

00:19:49
We love.

00:19:49
It, I don't think.

00:19:50
We've ever Chris had anyone on the podcast.

00:19:52
Who shared some music?

00:19:54
Clips with us.

00:19:55
No, never. That was awesome. That was awesome. Well, I I really love the idea that we describe people based on their needs rather than, like you said, some sort of deficit adjective, right? Makes a lot of sense to me.

00:20:13
The music? Exactly. That's the way we get stuck and proving out with.

00:20:32
Yeah, absolutely. I, I we definitely shifted from non verbal or at least I have shifted to non speaking. But I completely agree with your sentiment. There's a lot of negative connotations just with, you know the word or the the prefix, non right?

00:20:51
It's like it coming.

00:20:52
From a place of deficit or lack. So I like the multi modality communicator. I also tend to use individual with complex communication needs, just because I feel like it doesn't have those same kind of connotations.

00:21:20
Yes, it's focusing on support and systems.

00:21:26
Yes, absolutely. Let's let's shift into talking about, so you had reached out to me on social media and I had posted a reel about hand over hand prompting. So I wanted to talk about you and your experience there and how you feel about hand over hand prompting. And just for maybe our listeners who aren't familiar with what that is, you know, taking a student's hand and kind of activating an AAC is what hand over hand prompting is.

00:22:04
Well, the problem is you do not make muscle memory. You do not make new neural pathways. When you are a passive participant, you have no agency. You are getting bullied. I love your term body autonomy.

00:22:25
FC has the hand on hand method and it gives negative resistance. It feels like when you pull your arm through water, like when you are swimming. This gives you time to slow down, to think, to organize, to plan. Typing has everything to do with motor planning, but if someone is doing all the planning for you like in hand over hand, you're not making any plans yourself. It is interesting that hand over hand is the go to method for everything in special education, but when someone even thinks about skin to skin contact in regards to communication, controversy erupts.

00:23:11
It can't be real. It must be fake. There is skin to skin contact. Holy smokes.

00:23:24
You know, Otto, that really resonates with me, Because when you think about learning any sort of skill, like throwing a football or you mentioned swimming, right? Someone's not grabbing someone else's hand and forcing them to do it and doing it like me, how I'm going to show you how to throw it by grabbing your hand and throwing the football for you. But you might give some gentle support or show a video. First start with a video or start with watch me how I do it and if there's a slight adjustment needs to be made saying you know is it OK if I move you in a certain way to show you this is where your feet should be or this is where your hand should be. And then let go to provide some sort of instruction in a again in a way that is very respectful and in you're asking for, you're inviting, you're asking for permission, I guess is the way I'm.

00:24:18
Does that sound fair?

00:24:41
For me, conversations about the way my body can move in more efficient ways is helpful. But when you're presumed to have no receptive language, no one explains things to you. They just grab you.

00:24:55
Yeah, You know, and also with when you're presumed to not have any receptive language or another sort of poor practice that I see people do is talk about somebody when they're right there. Like like like they're not there. Like talking about a student or a person. When they're They're right there. Talk with them.

00:25:15
Talk to them right.

00:25:17
Yes.

00:25:21
So those are some things people maybe shouldn't do and some practices that we're trying to extinguish. Do you have any stories? I mean, people love stories. Any funny, heart warming, challenging stories to share about your perspective and your experiences?

00:25:41
Doctor Levy, a famous neurosurgeon, likes to tell everyone how. I told him his book club choices were basic. Another time I was in the emergency room after a seizure and the doctor asked if I had any questions when he was discharging me and I asked him why can't I talk? He freaked out and asked could you talk before your seizure? I said no.

00:26:07
Ha, ha, ha.

00:26:15
He thought the seizure caused you to not be able to speak anymore.

00:26:22
Yes.

00:26:27
OK, Otto, there's one question that we ask everyone on the podcast who comes on, or at least I do. If you had a billboard that everyone read, what would your billboard say? That's right.

00:26:43
Yeah, I have so many. Make impossible your bitch. You can't say low functioning without the big FU. One finger, 26 letters, infinite possibilities. Why merged with a message.

00:27:02
Go to www.autosmodels.com.

00:27:08
I love it. I love it. So I.

00:27:11
Love that so much too, Rachel. And so, Otto, you're making me smile and making me laugh.

00:27:15
Yeah, I wish. This is audio only, but we're we have big smiles over here as we're recording this interview. Otto, you're doing a lot of entrepreneurial work and a lot of speaking events and things like that. What's next on the horizon for you? And you know, what are some of your goals in the future as an advocate?

00:27:35
What's next? World domination, of course. But seriously, I am presenting in January with my best friends Bella and William in Sacramento for the Eldorado Charter Selka, their annual conference. We are planning a visit to the Governor's office as well. I will continue my advocacy work with the message that AAC and access to communication is a human right, not just a disability right.

00:28:10
Instagram is a great way to find me at auto_types and my website is a great way to order letter boards or merge with a message www.autosmottos.com.

00:28:26
Yes, and we'll definitely link to that in the show Notes Auto so people can connect with you on social media. You can find your website. Thank you so much for coming on and sharing your perspective.

00:28:36
We really appreciate.

00:28:38
Listening to AAC users, amplifying your voices on this podcast and you have a unique perspective and also are just super.

00:28:45
Fun to hang out.

00:28:46
With so thank you so much for taking the time to come on today and talk with us.

00:28:54
Thank you for the generosity of your time and for leading the charge to change the way people view access to communication and normalizing individuals with speech related disabilities. It's been a blast.

00:29:12
Amazing. Well, we are so excited to share this episode for talking with tech. I'm Rachel Mado, joined by Chris Bouguet and Otto Lana. Thank you guys so much for listening and we'll talk to you guys next week.