Episode 179: A nonspeaking autistic writer’s advocacy – with Ben Breaux

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Thanks for joining me today! I’m really excited to share this interview with you. My guest today is Ben Breaux, a 22-year-old nonspeaking autistic writer and advocate with epilepsy from Northern Virginia. He has written many articles for numerous autism advocacy groups worldwide and is a proud representative for his community on several advocacy boards and committees, both in the state of Virginia and nationally.

Ben is an aspiring journalist who feels it is very important that non-, minimal- and unreliably speaking autistics have equal rights, opportunities, and voices in society. He writes and advocates on these topics and more on his public Facebook Page and on TikTok.

Ben uses a letterboard and a text-to-speech app on his iPad to communicate. I sent Ben my interview questions ahead of time, and he spelled out his answers beforehand on his letterboard and then prepared them in his iPad. During this interview, you’ll hear me ask a question and Ben will respond using his iPad.

You’ll get to hear Ben describe what his life was like before he had a reliable way to communicate, and how life changed dramatically after he learned how to communicate using a letterboard.

He also discusses his writing and his advocacy work with Neuroclastic and CommunicationFIRST, two amazing organizations that advocate for nonspeaking autistic people, amplify their words and share their stories.

Towards the end of our conversation, Ben shares his advice for parents of nonspeaking children and his advice for nonspeaking people themselves.

I really enjoyed this conversation, and I’m sure you will too! Here it is — my conversation with Ben.

Carolyn Kiel: Hi Ben, thanks so much for joining me on the podcast today. What was your life like before you learned how to use a letterboard to communicate?

Ben Breaux: I was only able to communicate in the most simple, functional terms provided on the app on my iPad, so my personality and humor were locked inside my head. Along with that, were all the bad things too. I couldn’t explain when I was in pain or why I was crying and biting my arm and hitting my head. I could only really say that I was hungry or tired, or wanting to go in the car or to the bathroom, leading me to so much frustration. Ironically, no words can adequately describe this feeling.

Carolyn Kiel: Wow. Yeah, that sounds so challenging. And what kind of education were you getting during this time?

Ben Breaux: Practically none. The public school system, one of the largest in the country, mostly looked at my deficiencies and behaviors instead of my intelligence and considerable abilities. My IQ tests were wrongfully and unfairly given by demanding spoken out loud responses, which consequently meant my scores appeared as very low. This gave even further proof to society and its education system that I was not worthy of an academic education.

My experience fighting for a true education has been a lot. It has involved numerous switches in schools, some great, some terrible. Multiple programs were good experiences, but lacked the support staff I needed, were too far away, or I simply aged out of them. The bad experiences were truly horrific and traumatic, and shows the awful truth of what is available for students with disabilities and things that no person should ever have to go through.

While I did learn some valuable life skills and how to use my iPad adapt for basic functional language along the way, the common theme was that since I was considered a nonverbal student, I could only partake in the life skills based curriculum. Even after becoming fluent on the letterboard and proving my ability with a communication regulation partner to complete complex academic lessons, this reality did not change what the teachers and staff at school would take the time to teach me. This only resulted in me being granted 10 minutes of academics a day when possible. Even though short, these lessons were so much better than completing mindless tasks all day. These academic allowances were eventually taken away. Frustrated with having to prove myself every day, I decided to look for a school who would accept me as I am, allow me to earn my full high school diploma and take actual academic classes.

Carolyn Kiel: Wow. Yeah. That, that sounds so frustrating. That, the 10 minutes a day, I can’t get over that. Wow. So how did you get introduced to the letterboard?

Ben Breaux: My mom was part of the biomedical Facebook group, and she saw a mom post about something her non-speaking son said. She reached out because she was confused how they could understand what he said if he was non-speaking. The mom explained that he used a letterboard. She said they lived in Australia, but went to a place in Herdon, Virginia where he was introduced to letterboarding by Elizabeth Vosseller at Growing Kids Therapy. My mom decided to take me to Elizabeth to learn how to spell on the letterboard, and I slowly started to be able to express myself in a way I couldn’t before. My first communication and regulation partner was Jessica. I will forever be grateful to these wonderful women for pushing me and never giving up on me.

Carolyn Kiel: Wow, that’s awesome. So how did your life change once you were able to communicate using your letterboard?

Ben Breaux: Once a fantastic friend opened up my brain through letterboarding, there was no going back. I’ve forged so many meaningful relationships with people through conversations made possible for me using the letterboard. I can finally express my inner thoughts and feelings, and say no if I don’t want to do something. I was able to communicate and advocate for myself to fight for the education I deserve, and I am happy to say I achieved this, and I’m currently working to earn my full high school diploma.

Carolyn Kiel: That’s really great. And you also do a lot of advocacy and writing. And NeuroClastic is one of the organizations that you work with. So tell me about the work you do with NeuroClastic.

Ben Breaux: I am an advisor and a contributor for NeuroClastic. Sometimes I will write about a topic of my choosing, and other times Terra will ask me to write about a specific topic. I also will provide my opinions for questions they have about nonspeakers.

Carolyn Kiel: That’s great. Yeah, that’s such a great resource for autistic people and nonspeaking autistic people, and it’s awesome that you contribute to that!

And you also work with an organization called CommunicationFIRST. So tell me about the work you do with CommunicationFIRST.

Ben Breaux: I am a member and an advisor for CommunicationFIRST and act as liaison between CommunicationFIRST and the Arc of Virginia alliance. As an advisor, I help make sure the organization’s decisions are in the best interest of nonspeakers like me. I also participate in advocacy efforts to spread the organization’s mission to protect and advance the rights, autonomy, opportunity, and dignity of people with speech related disabilities. The goal is for every person with a speech related disability to have what they need at all times, to communicate effectively, to be fully included in their community, and to be free from abuse.

Carolyn Kiel: Yeah, CommunicationFIRST does a lot of really great work advocating for people with speech disabilities, as you said.

You’re an advocate, you’re a writer. What issues do you feel passionate about advocating for?

Ben Breaux: Anything that includes helping those who are oppressed or ignored in society. My goal is to make sure everybody has a voice, and equal rights and access to all available resources and opportunities. I know firsthand how it feels to be disregarded and thought less of, and I will fight to make sure nobody else has to feel that way.

Carolyn Kiel: Yeah, that’s really important. People need to hear from non-speaking autistic people.

You have your own Facebook page, which is where you share a lot of your writing as well. So what inspired you to start sharing your writing on your Facebook page?

Ben Breaux: When I started writing, there was always a big reaction. I think people were surprised that as a nonspeaking person, I had so much to say. And as someone who couldn’t express my thoughts before, I had a feeling other nonspeaking people needed someone to help spread that we are capable of profound thoughts. I wanted to put my writings in public to show people what is going on inside my head. Just because no words come out of my mouth does not mean they are not in my mind.

Carolyn Kiel: Absolutely. What do you like to write about?

Ben Breaux: I love writing about anything that can educate, inform, and/or inspire other people. This ranges from personal experiences and opinions, to book, movie, or play reviews. I am always looking to expend my writing practices, and I am excited to see what is in store for me and my writing career.

Carolyn Kiel: That’s awesome.

Do you get to spend time with other nonspeaking autistic people on a, a regular basis? And what’s it been like spending time with other nonspeaking autistic people?

Ben Breaux: I have a group of good friends that are nonspeaking too. I get to hang out with them sometimes, lately, more now than before this year. I also go to as many events for people with disabilities as possible. I love these opportunities because they allow me to be a part of a majority somewhere and not stand out as much. Hanging with my friends is really relaxing because they have less expectations of me and they understand me deeper than others.

Carolyn Kiel: That’s really great. Yeah. So important to have that community online and offline. That’s great you got to spend time with them more now than you have in, in the past year or two.

For people listening who wanna learn more about nonspeaking autistic people, what’s the best way for speaking people to approach and connect with nonspeaking people?

Ben Breaux: First presume competence. Don’t talk down to nonspeaking individuals. We are not all children because we do not talk. Then, don’t assume that we want to solely talk about our disabilities because we are so much more than that. Treat us like human beings and we can communicate in our own ways and connect that way. If someone uses a letterboard like myself or any other communication tool, allow them to finish their words without guessing or interrupting.

Carolyn Kiel: Yeah, that’s really important. That’s perfect, great advice.

Where can people go if they wanna read your writing?

Ben Breaux: You can mostly find my writing on the websites of NeuroClastic, CommunicationFIRST, and on my public Facebook page at “Ben B. – My Own Words: Reflections of a Non-Speaking Autistic.” You can also reach out to me through Facebook, Instagram, or email, I’ll send you my account handles so you can put them in the caption.

Carolyn Kiel: Thank you. I’ll do that, yep. Put them in the captions and in the show notes of the podcast so people can click on them and find your writing that way. Thank you.

Ben, I would love to get some of your advice as a nonspeaking autistic person. As a nonspeaker, what would you like parents of nonspeaking children to know?

Ben Breaux: Each child is different and has their own special qualities, attributes, and needs, and should be treated as such. It is unfair to your child to compare them to others. Ask for advice and input from your child and listen to them. Include them in all conversations and important decisions, especially with regards to anything in their lives. Take them with you to fun activities or errands and teach and be patient.

Carolyn Kiel: Yeah. Perfect. And what advice do you have for nonspeakers themselves who may be struggling right now?

Ben Breaux: It’s okay to be scared or frustrated with yourself, your body and your brain. It may feel like you’re dealing with three poorly behaved children, but think of all the good things they work together on. Your heart keeps beating so your body receives blood and nutrients, because of signals your brain sends. Your body and brain are doing so much for you every day, so try to be patient and understanding with them. Think of how much you are capable of if your brain and body already do so much together to successfully keep you alive. These feelings are normal, but don’t let them stop you from achieving your dreams. You are capable of anything.

Carolyn Kiel: That’s awesome. Yeah. Thank you Ben for those words and thank you so much for being on my podcast. I really enjoyed talking with you. And thank you again for being on the show.

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