This December, Max Masucci came to ski with Achieve Tahoe at our Northstar location, made possible through a Vail Resorts EpicPromise Grant. Max has autism spectrum disorder and communicates with a letterboard as he does not have verbal expressive language. After his lesson, Max answered some questions for us via email, in the hopes of sharing his experience both of living with and skiing with autism.
Achieve Tahoe: Where are you from, and how old are you?
Max: I have lived in various places in the Northern Virginia and DC area. Today, I consider Purcellville, VA in Loudoun County to be my home. I am 16.
Achieve Tahoe: How do you communicate with the world? How does being heard and understood make you feel?
Max: I experience the world as a non-speaking autistic person, although having this disability in no way affects my intellect. I communicate through a letterboard, spelling my thoughts by pointing at each letter, choosing my words carefully. It is extremely important for me to be heard and understood, having no other way of making myself known to the world. The hardest part about being unable to speak is the silence that surrounds my mouth, when I have something I really, desperately want to share. Making myself known is the most liberating part of the incredible journey I have been on, since I’ve started spelling on the letterboard.
Achieve Tahoe: What are your favorite things to do at home? What do you want to be when you grow up?
Max: I enjoy cooking. I definitely need help doing this, in order to avoid leaving a huge mess behind! I also enjoy going on walks to calm my mind. Having the chance to earn a high school diploma is also a major goal of mine, so I spend a lot of time in an online school.
I would like to be a writer, because I believe I have something to say about having a disability that leaves me without a lot of great choices in life, but choosing a meaningful life in spite of it.
Achieve Tahoe: What did you do when you went skiing with Achieve Tahoe? How would you describe your experience to someone who has never been skiing before?
Max: My instructors really had their work cut out for them when they met me. I started out with a little experience, having skied before in Vail through another adaptive ski program. However, I still needed help to make my hardwired brain move my body in order to ski, without making a fool of myself. My teachers had me train my body to turn and stop through the use of some creative tools, including ropes, as well as a wheel that I held to make my brain learn to turn my body.
It took a not insignificant amount of energy to make my body move this way, not having a brain that behaves as well as it should. But it was worth every ounce of sweat to make my hardwired brain retrain itself so that I could experience skiing.
Achieve Tahoe: What was the hardest part about skiing? What was your favorite part about skiing?
Max: The hardest part of skiing is stopping, which is challenging because I still have trouble controlling myself on a hill. The instructors had to stop me using a combination of rope and force.
I enjoyed the entire experience–even the sweating! The mountains were breathtaking. And the instructors were incredibly kind.
Achieve Tahoe: How did skiing make you feel?
Max: Skiing has opened a new reality up for me. Describing the experience is extremely hard because only another boy with autism could understand all the things that had to happen to make myself stand on those skis and inch my way down that hill and experience the sensation of movement and light wind on my skin. Very few people would comprehend the necessary elements that I had to coordinate to keep myself from falling. Basically, the entire experience was exhausting. Despite this, I had a life-changing experience and I would not change anything about it!
Achieve Tahoe: What would you tell someone who is considering coming skiing with Achieve Tahoe?
Max: I would tell them to be prepared to sweat! Expect to work hard. Have faith in the process.
Thank you Max for sharing your experience with us and we hope to ski with you again sometime soon! For all our readers, Max’s writing about his experience growing up with autism has also been featured in a New York Times award winning essay, which can be found here.