Episode 155: Nonspeaking autistic self advocacy – with Noah Seback

The episode transcript is below.

Carolyn Kiel: Oh hey, this is Carolyn! I just wanted to give a quick introduction to this episode before we get started. My guest today, Noah Seback, is a nonspeaking autistic young man. You’re going to learn more about him in just a minute.

Since Noah is nonspeaking, you’ll see him on screen with his communication regulation partners, David and Nadine Seback (who are also his parents). You’ll also hear David and Nadine speaking Noah’s responses throughout the interview.

Here’s how that’s going to work. I sent Noah my interview questions ahead of time, so he has already spelled out most of his answers. David is going to read Noah’s responses to those questions. I also asked Noah a few spontaneous questions during the interview – he answered those questions using his letterboard and you’ll hear Nadine read his responses. I’ve edited out the spelling process on the letterboard, in the interest of time.

So, that’s a little background for you on how this interview is structured, and how the conversation will flow. In essence, today you’ll be hearing Noah’s words, spoken through David and Nadine’s voices. In other words, whenever I ask Noah a question, no matter whose voice you hear, the answer is coming from Noah.

Ok! And now let’s get to my conversation with Noah.

Welcome to the Beyond 6 Seconds podcast. I’m your host, Carolyn Kiel. And on today’s episode, I’m very excited to be speaking with Noah Seback. Noah is a non-speaking autistic self advocate and lived experience expert who serves the non-speaking community as a peer support specialist through his mentoring business, qUirk. He’s passionate about access, autonomy and agency for this too long voiceless and traumatized population.

Noah’s here today with his communication regulation partner, David Seback, who’s also his dad. And since Noah’s non-speaking, this interview is structured a little differently from my other interviews. So I sent Noah my interview questions ahead of time. So he’s already spelled out his answers. David’s here to read Noah’s responses. So you’ll be hearing Noah’s words through David’s speaking voice, but all the answers are Noah’s.

Noah and David, welcome to the podcast.

David Seback: It’s great to be here. And, my wife Nadine also is on the side. She’s Noah’s communication partner. And like you said, I’ll be reading his answers.

Carolyn Kiel: Perfect. Wonderful. So yeah, the first question I have for Noah is, what was your life like before you started using your letterboard to communicate?

Noah Seback (via David Seback’s voice): My life really hadn’t started yet. I had no say in the course or events of my life. I watched and listened as others tried to fix me, as others bemoaned my issues and pitied me like I was invisible. I was required to jump through hoops and if I could, it meant I was worthwhile. I moved through life feeling like I was stressed out, burdening, complicating life for those I loved, just for being me. I was ashamed and eventually resigned to the fact that no one would ever know the true me, except for God.

My silent prison was impenetrable. No key existed. It was like solitary confinement in plain sight. I was watching the rest of the world partake in everything imaginable that would never be available to me.

Carolyn Kiel: Yeah, Noah, that sounds incredibly difficult. I can’t even imagine. And I definitely want to learn more about what it was like and what other challenges you had around communication. So what other communication methods did you try before the letterboard?

Noah Seback (via David Seback’s voice): It became clear that my speech was not going to improve and that neither signing or handwriting was an option. My fine motor coordination wouldn’t allow it. So they moved on to every low-tech and high-tech assistive option out there. Methods using various pictures, symbols, or word systems didn’t work. Why? Because it just wasn’t a coordination problem. I have apraxia. This is a neurological condition resulting in a breakdown between planning and executing of motor or muscle movement. I know what I want my hand or mouth to do but cannot make the muscles do it. This is what’s called the brain body disconnect. So choosing pictures or symbols reliably didn’t work. I had to be systematically coached and trained to master pointing to letters on the letterboard.

Carolyn Kiel: Yeah. And so it sounds like you tried other methods and that the letterboard was really the one that kind of unlocked communication for you. So how did you get introduced to the letterboard?

Noah Seback (via Nadine Seback’s voice): By a dear friend who was very insistent. I was in a very bad place at the time. My family was overwhelmed, but she persisted saying that she had seen it work for other autistics with profiles that were very similar to mine.

Carolyn Kiel: Very good. And how old were you when you started using the letterboard?

Noah Seback (via Nadine Seback’s voice): 16.

Carolyn Kiel: Oh, and that was, what was it? Five years ago? Is that correct?

Noah Seback (via Nadine Seback’s voice): Seven. Wow!

Carolyn Kiel: Wow. Seven already. Wow. So yeah. What was it like using the letterboard for the first time?

Noah Seback (via David Seback’s voice): It was a surreal experience. Since every other method was impossible for my body, why would this one be any different? But it was. Specialized coaching enabled my body to learn how to initiate and how to continue pointing to individual letters one at a time on a letterboard. The coach or the communication partner also presumed I was competent and intelligent, that I cognitively knew how to spell. They understood it was my body and muscle movement that was the problem. It was NIRVANA! Now the world would know; I was in here and I knew everything that was going on.

I may present on the surface as being pretty much out to lunch, but I’m not. To have moved through my entire life presumed to be and treated as intellectually disabled when I’m not, and then to watch the realization dawn… It’s like a new birth. And long overdue.

Carolyn Kiel: Yeah. And I know Noah you’ve told me as we were preparing for this, that one really important thing is to presume competence of all nonspeakers, especially before they find their method of communication and then certainly after that.

So it sounded like that presuming of competence really helped you in mastering that letterboard, or at least giving it a try.

Noah Seback (via Nadine Seback’s voice): Yes. It’s key. Just look at me tonight. I’m not looking very scholarly.

(Laughter)

Carolyn Kiel: It sounded like you were working initially with a different communication regulation partner to learn the letterboard. But, now your parents are both here: David, as well as Nadine who are now some of your communication regulation partners. And this question might actually be more for David. Just in case people aren’t really aware that the role that you’re playing today, and that Nadine is playing to help with the extemporaneous questions, that’s a trained role. So you can’t just show up and be like, okay, I know how to do this. So David, I was curious what your experience was learning how to become a communication and regulation partner.

David Seback: Actually Nadine would be the better person. She went through some training and got certified to be a CRP (communication regulation partner). So she could, I think, speak a little better to that.

Nadine Seback: Noah was trained in a specific methodology by somebody trained in that methodology and they coached me. As Noah became proficient, they coached me to become proficient as well.

The goal is always for the people that surround the autistic to learn how to communicate because the trained practitioner is not going to be there with them in their daily life. And so it’s always a priority to train those people up fairly quickly. Then on top of that, yes, I did go back and get trained so that I could teach other people how to teach their young people how to spell on the letterboard.

But as far as learning with Noah, once he learned, he basically had to train me. And it’s kind of like dance partners. Everybody’s relationship is a little bit different. Noah might spell a little bit differently with one person versus the other. And the reason there is a regulation piece, in addition to the communication partner. As a CRP, in addition to coaching the motor and making sure that the speller’s motor and Noah’s motor stays on task, there’s also a regulation piece to keep his, just regulation level just even, and him feel supported and trusted, that I’ve got his back and that I’m there to help and support him, because it’s just really easy for his body to go a little wonky.

Carolyn Kiel: It’s a partnership. It sounds like as much as the technical skill, it’s the relationship and the mutual trust between Noah and you as the partner.

Nadine Seback: Right.

Absolutely. So Noah, how did your life change once you were able to communicate using your letterboard?

Noah Seback (via David Seback’s voice): To be clear, communicating fluently on a letterboard required grueling practice, time and energy, and perseverance to reign in my unruly body. All 100% worth it.

I was 16, so even my parents had to get to know me. There were myths to be debunked. This learning and unlearning took time, but from day one, it was full speed ahead into a brand new future. Every aspect of my life changed. And for the better. Finally, I could pursue a meaningful future. Finally, I could speak into my own life in ways that many of your listeners take for granted. I could express my opinions, ideas, hopes, dreams, fears. I could express the trauma I had suffered with no way to raise an alarm.

Carolyn Kiel: Noah, yeah, absolutely life-changing. So, at age 16, once you started using the letterboard, you were finally able to communicate. But when you started communicating with your letterboard, some people doubted that your words were really coming from you. So what do you say to the “haters” who don’t believe that letterboard spelling is a valid method of communication?

Noah Seback (via David Seback’s voice): Unfortunately too many people still won’t recognize this as valid communication. There are many things I could say, but won’t. I could make many arguments, and have. The whole non-speaking community has and continues to do so. We get weary of trying to prove ourselves every minute of every day. We have complex sensory, movement, and emotional profiles, which make us present as quirky and unusual. This doesn’t help our case. People take one look and automatically judge that it’s impossible for us to have intelligent thought. People don’t realize the crucial role that our communication regulation partner plays in keeping our sensory, movement, and regulation on track. This is what they are doing, not directing our spelling.

But if I had to pick one thing, I would appeal to the naysayers’ humanity. Communication is a right, a human right. I am neurodiverse, I’m different. Yet I’m still a human being. In this age of diversity and tolerance, why would anyone want to deny my right to speak into my own life and wellbeing? Open your mind and heart. Talk to a nonspeaker. Get to know them before you automatically dismiss their capability and lobby for them to be doomed to an existence without communication. You might be surprised by what, and who, you find.

Carolyn Kiel: Yeah, absolutely. And once you started communicating through the letter board, you started doing a lot of writing and blogging, now finally being able to express all of the thoughts and the feelings that you had inside. And you’ve written about the trauma that you and other non speakers have often faced. So I’m curious. How, how do you begin to heal from like 16 years of, of the trauma that you faced before you could communicate with your letterboard?

Noah Seback (via Nadine Seback’s voice): I could devote a whole podcast to that – or two!

(Laughter)

Noah Seback (via Nadine Seback’s voice): But the first step is for you to admit to yourself that you have to face the pain and work through it, because it doesn’t just disappear. You also have to be brave enough to let those closest to you know that you’re really, really struggling.

Carolyn Kiel: Yeah. That’s, that’s really powerful. With so many people going through so many challenges. I think I read in one of your other blog posts or another article that you wrote that one of your big goals was to really help people, or if you had a superpower, that it would be to really help people overcome and heal from their trauma. So that’s a really noble and powerful goal. And the business that you started, called qUirk, that’s one of the many goals that you have through that as well. So I’d love to learn more about your business. What inspired you to start qUirk, which is your coaching and mentoring business that helps nonspeakers?

Noah Seback (via David Seback’s voice): As I just shared, nonspeaking autistics have complex profiles that have been misunderstood until recently. Now, those of us with lived experience like myself have been able to set the record straight and bring new understanding. We encounter unique challenges that neurotypicals just don’t get, can’t get. Nonspeakers benefit from hearing a nonspeaking perspective that can truly empathize and relate while problem solving strategies and bringing hope. It would have helped me tremendously to partner with someone who had already been there, done that. So I created qUirk. I wanted to be upfront with the obvious: nonspeakers are different. But that doesn’t need to hold us back. We can be whole. We can thrive. And I want to make that happen.

Carolyn Kiel: Yeah, that’s powerful. And I think your role as a peer mentor and a peer coach is a really unique experience, I would imagine for a young nonspeaker or a nonspeaker of any age, to have someone who’s had that lived experience who really understands what other nonspeakers are going through. That just sounds like such a powerful and special thing to be able to provide for other nonspeakers. So I just think that’s really awesome and just so incredibly helpful.

Noah Seback (via Nadine Seback’s voice): Thank you, Carolyn. I hope my clients agree. So far, so good, I think!

(Laughter)

Carolyn Kiel: That’s fantastic. So what kinds of things do you coach and mentor nonspeakers with?

Noah Seback (via Nadine Seback’s voice): Body dysregulation. Motor loops, which are often confused with OCD. Inflexibility and strategies to work with their parents.

Carolyn Kiel: That sounds awesome. Are you usually on coaching calls with the nonspeaker and either their parent or their communication regulation partner, and do you work with both of them?

Noah Seback (via Nadine Seback’s voice): Yes, I do. It’s a very complicated relationship to have a parent as your CRP, due to boundaries, privacy and the interdependence that is necessary.

Carolyn Kiel: Yeah, I can imagine. Absolutely. Noah, you’ve said that you especially want to help nonspeakers who are labeled “the worst of the worst” in quotes, because their challenges with communication and body regulation are misinterpreted as behavior problems and or intellectual deficiencies. Why are these types of nonspeakers so close to your heart?

Noah Seback (via David Seback’s voice): Because that was me. I was labeled an aggressive behavior problem and treated as such. I was secluded, isolated, restrained. I was talked about as if I was a rabid animal. This was horrifying and humiliating. You have to understand that on a good day, balancing our sensory and movement differences is difficult. In a high stress, emotionally charged, sensory overload type situation, it’s even harder. Our bodies lose control. This is a primitive survival response: fight or flight. It can look very intentional and deliberate. It’s not.

We already carry around a lifetime of being viewed as a forever toddler, being stared at and ridiculed for our differences, being marginalized. When circumstances continue to overwhelm, our bucket of accumulated stress spills over, and takes over. We are already mortified by our own actions. Then, we must endure the judgment and the punitive treatment reserved for deviants or criminals. I want to save every nonspeaker I can from this trauma.

Carolyn Kiel: Yeah, well, that’s, what you’re doing Noah is really a gift to other people, to nonspeakers, to everyone in the nonspeaker’s life who loves them and cares about them, to help allay some of this stress and distress and isolation that comes from not being able to communicate. With your own lived experience and your own expertise, being able to come in and, and help people have more fulfilling and happier lives. It’s really noble and it’s such a gift that you’re giving to people. So thank you for doing that.

Noah Seback (via Nadine Seback’s voice): Carolyn, my head is going to get too big. Thank you.

(Laughter)

Carolyn Kiel: Well, I still think it’s a fabulous thing that you’re doing. So how can people learn more about either your story or your mentoring services and coaching services through qUirk?

Noah Seback (via David Seback’s voice): Check out my website at QuirkThrives.com. That’s Q U I R K T H R I V E S, one word, dot com, to learn more about my peer and family support services. You can find links there to all things Noah Seback.

Carolyn Kiel: Okay. Very cool. And I’ll put a link to that website in the show notes so that people can click on it if they’re online and get there easily. Very cool. So Noah, as a nonspeaker, what would you like parents of nonspeaking children to know?

Noah Seback (via David Seback’s voice): No matter what the quote “experts” say, no matter how your child presents on the outside, no matter how hard it might be for you to believe, your child is in there soaking up everything. They need your support to find a way to unlock their voice. But don’t stop there. Listen to their voice and support them to become an autonomous, fulfilled, productive member of society. Provide access to opportunity and wellbeing. You won’t regret it.

Carolyn Kiel: Yeah. That’s really important advice. And what advice would you have for nonspeakers who are struggling right now?

Noah Seback (via David Seback’s voice): I see YOU — not your quote unquote “behavior,” not your unusual presentation. There’s hope for your dysregulation, your motor loops, your any other unique challenges. Hope for your life and for your future. There was a time in MY life when it was unthinkable that I could be doing what I’m doing right now. It takes hard work, but embracing your differences and becoming whole is possible. I’m living proof. And anyway, what else in our lives has ever been easy? So don’t lose heart and never give up.

Carolyn Kiel: Great words to end on. Well, thank you so much, Noah and David and Nadine for, for being here and being on my show and yeah, Noah, I really appreciate you sharing and really opening up about your story. And I really loved learning about the way that you’re helping other nonspeakers.

Noah Seback (via Nadine Seback’s voice): Carolyn and I appreciate the opportunity and the platform that you extended to me here, and most of all, your grace and acceptance.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help us spread the word about this podcast. Share it with a friend. Give us a shoutout on your social media or write a review on Apple Podcasts or your favorite podcast player. You can find all of our episodes on our website and sign up for our free newsletter at www.beyond6seconds.net. Until next time.