I wish today that today’s guest Ethan Nagy was my very first guest not just because of the gems of insight he gifts to us in this podcast but because his perspective is unique and mindset shifting.
Ethan Nagy is a non speaking autistic who uses a letter-board to communicate. He learned to spell using a method called S2C (please see I-ASC.org for more info). Ethan is a disabilities advocate and author who contributed an essay to the book “Underestimated: An Autism Miracle.” He is completing his high school diploma and plans to attend college. Ethan is currently writing a book. He resides in Oregon with his family.
In this podcast Ethan talks about his relationship with food, interspersed with wisdom about how therapists and medical practitioners can work with and respect people with disability.
If you have never heard a podcast from this perspective before, Join me as I soak in the freshness and wisdom.
For more discussion and support, visit www.facebook.com/functionalnutritionforkids
Audio Transcription:
This is the 71st Episode of Functional Nutrition and Learning for Kids and the very first episode where I interview someone who is Autistic. I wish today that today’s guest Ethan Nagy was my very first guest not just because of the gems of insight he gifts to us in this podcast but because his perspective is unique and mindset shifting.
If you are a parent, or a Medical Practitioner, or anyone that works with kids, you should hear this podcast for Ethan’s wisdom.
I am Vaish, Chemist turned Functional Nutrition Consultant and Science Educator.
As mom to a mind-bending poet with Down syndrome and Autism, who happens to be non-speaking, it wasn’t too far back in time that I felt helpless at what I saw to be Sid’s dis regulation, severe gut issues, apparent lack of communication, extremely low energy and disinterest in anything I offered.
Fast forward through thousands of lessons learned about the gut, the brain and much more important the extreme importance of Assuming Intelligence and Presuming Competence, Sid lives a motivated ambitious life as poet extraordinaire, regulated, focused, individual and me as an OK mom who still gets in the way.
I present this podcast: Functional Nutrition and Learning for Kids in order to bring to you the lessons that have changed my life from guests who are game-shifters!
Going forward, it is my mission to interview more and more Autistic people that are living what we are talking about. If you have a disability and would like to be interviewed on this podcast, please reach out to vaish@functionalnutritionforkids.com
Back to ETHAN!! “Ethan Nagy is a non speaking autistic who uses a letter-board to communicate. He learned to spell using a method called S2C (please see I-ASC.org for more info). Ethan is a disabilities advocate and author who contributed an essay to the book “Underestimated: An Autism Miracle.” He is completing his high school diploma and plans to attend college. Ethan is currently writing a book. He resides in Oregon with his family. “
In today’s podcast, Ethan used a letter board to spell out his answers, which were read out for the listener with Ethan’s permission by Dana, Ethan’s mom.
Here are the questions read by me, followed by Ethan’s answers read out by Dana.
Q. Welcome to Functional Nutrition and Learning for Kids, Ethan. I am so honored to have you here. Can you tell the listeners about yourself?
Ethan: Hello! My name is Ethan Nagy. I am a non-speaking Autistic. My home is in Oregon, so my amiable friend Vaish asked me to be in her lovely, fine, podcast.
Q. Tell us about how you communicate and how this has made a difference in your life.
Ethan: I am using a letter-board to communicate with you. I point to the letters on this board. Hard to do given my motor planning and ocular issues. My mom is an S2C practitioner, so she gives me coaching. My feelings about gaining communication are hard to summarize. Imagine no light and then getting a window opened. My feelings are myriad.
Q. Do you have a message for therapists and healthcare providers that work with Autistic Kids and Adults?
Ethan: Live a moment in my sensory experience not in my outside appearance. Sometimes giving faith in my intelligence is all I need to become calm.
Q. Please share your favorite food experience. What do you absolutely love?
Ethan: My favorite food experience is ingesting lovely hot chips at a Mexican restaurant for the first time. So crunchy and hot with hot salsa! It really made my mouth so happy!
Q. What is your WORST food experience. What do you absolutely hate?
Ethan: My worst experience is eating mushy consistency food. It makes me gag and spit out my food. Given my issues, making me eat mushy food is a lesson in futility. I hate oatmeal!
Vaish: You know, it is really helpful to know that about Oatmeal. I didn’t know you had such strong feelings. And it is helpful to listeners and therapists to know that certain foods are just not going to work, at least initially, or at least until you change your mind.
Q. I am curious, what is YOUR experience with food?
Ethan: I love food. It is my joy. I love ingesting foods I enjoy. I tend to overindulge. I need to stop obsessing over ice cream. It is annoying to me and my family.
Q. What feelings do foods you dislike bring out in you?
Ethan: They make me angry in a primal way. I am not in charge of my sensory experience in those moments.
Q. If there was a food that you hated, but I wanted you to try it to increase your nutrient diversity and hence, your microbiome diversity, here are the approaches that I could try. Could you share how you feel about each of them?
- Going Cold Turkey and removing unfavorable foods and only having good foods available.
Ethan: You did this to me already, Vaish, with sugar! I wasn’t feeling love towards you in the moment, but it really did make a huge difference in the end.
2. Ok, what about this and I am a bit nervous to ask, but it is pretty popular these days, and I am ashamed to say I have tried it too – Sneaking in the food, say sweet potato puree in pasta sauces, etc.
Ethan: I know when someone is sneaking it in my meals, so don’t bother. I am part of the process to change my diet, so let’s make it happen together. I feel cold turkey is best for me.
Q. Lastly, any thoughts you’d like to share about your relationship to food
Ethan: My relationship is complicated. I was traumatized in school over the way I eat, my happiness in food mixed with shame. Getting therapy was the best thing I ever did. My relationship to food is back to a mostly healthy baseline. Given what I went through, I must tell others that withholding food or using it as a reward is not the answer. It makes most Autistics feel like caged animals. Meeting the goal of healthy food habits is a partnership of equals.
Vaish: A partnership of equals, it should be! I am beyond grateful to Ethan for agreeing to be on this podcast and sharing with us information from his unique perspective -that should be common sense, that we should have asked kids earlier, but most of us haven’t.
I am also grateful to Ethan for sharing his ideas with his characteristic non-judgmental grace.
Singing off, this is Vaish and I will see you next week again! If you loved this podcast, the place to have a discussion or ask questions respectfully is facebook.com/functionalnutritionforkids
