Full Name: Ryan Steiner
Age: 40 Kala’s Age: 5
Hometown: Terre Haute, Indiana
Current Residence: Peru, Indiana
Occupation: Stay-at-Home-Dad, Artist, Runner, Autism Advocate
1. When did you realize you had autism? Was it difficult to share this discovery with others?
I was in 3rd grade when I started to recognize I was different from the other kids. My mother was always pretty open with me about the diagnosis, so I never felt like it was something I needed to “share” with others. As an adult, when I was much better at hiding my uniqueness, I kept that information to myself as much as I could. My Nana always told me that people didn't need/want to know those things about me. I was taught that it was better to fit in than to be myself.
It wasn't until my senior year of college when I was put in a situation that required me to disclose my autism that my perspective changed. Surprisingly, the professor was astonished and expressed how much she thought I should share that information and believed it could help a lot of people. I began speaking to her classes about my life, and really started to love being autistic in a whole new way. Loving my real self was a novel concept.
2. You describe running as saving both you and your daughter Kala. Can you explain what you mean by this? How does running improve daily life for you and Kala?
Movement is so important for me to process information. I never sit still and I can't focus on a conversation or task without fidgeting or flapping my hands. When anxious or excited, I pace to alleviate the unwanted BIG feelings. In college, I would pace outside of the classroom so that I would be able to sit through the class and retain the information. I would even longboard 5 miles to school everyday. Of all the exercises I have tried, running has by far had the best and longest carryover into daily activities.
When I decided to go back to running a couple years after Kala came home from the NICU, I was a mess. I was having daily meltdowns and really didn't care for my own needs at all. I was dehydrated and eating horribly. I had gained 150 lbs of the weight I had fought so hard to lose. I had given up running because I was spending my whole day trying to help Kala navigate her own BIG emotions that almost everything in her environment would trigger. It was impulsive the day I decided I was going to start running again even though I would have to push Kala the whole way. I did the first 20 minute workout of a “Couch-to-5k” before heading to take Kala to her occupational therapy appointment.
Kala would usually start crying (screaming bloody murder) the moment we walked in the building until we were finished and driving away. On this day, she didn't start crying, instead she smiled at the other kid in the waiting room! It was small at first, but the more I ran with Kala, the more progress she seemed to make. Everyone started to notice how happy she was and my wife started to notice huge differences in me too. The world around me started to settle and Kala and I had settled into a great routine that seemed to save our lives.
3. What are some misconceptions the public has about autism?
I think there are so many misconceptions about autism that I don't even know where to begin. The hardest one for me is that no two autistic people are the same. A lot of people expect all atusitic people to fit into some “Rain Man” savant version of autism and that is a really hard thing to live up to. It doesn't make me less autistic, it makes me different autistic.
Empathy is another area where there is a lot of misunderstanding, missing social cues doesn’t mean that we are not capable of feeling. I feel way too much empathy which is one of the reasons social communication is difficult for me. Lack of eye contact does not mean we are not listening. If I am forced to look into someone's eyes, I actually have a much harder time mentally processing their words. Non-verbal doesn't mean no communication. Kala doesn't talk at all, but she is very good at expressing herself and her needs. One just needs to listen differently.
4. How did going back to college and studying psychology help you better understand your condition?
Going back to college put me in a position to learn about myself from the outside in. I learned about autism from a practitioner and research perspective instead of the client. Often in my life I was told what to do to help myself but never why. I relate better to the science of things than the emotions. Therapy often worked on the emotional parts but those were only the surface issues. Emotions are overwhelming for me and I feel too much.
Science is concrete and without emotion, so I am able to process the information without meltdown. I finally understood the why of my own behaviors, or at least how to discern it. I used the research I read to make adaptations to my own life and the way I interacted with others. I fell in love with exercise and the way I felt after a good workout. Fitness taught me that I was actually able to push myself to be better even when it was painful. I learned how to endure with purpose. I learned to focus on myself to find peace. No longer was my focus on how to make my existence easier for others. Self love is an amazing gift for one to receive.
5. You have struggled with weight gain at times during your life. What has helped you maintain a healthy weight?
Big goals!! That's why I love ultra running! Training for a race requires dedication to your eating and training. Food directly impacts how my next run will be. Running has replaced my relationship with food. That is not to say that I don’t still sometimes get into a funk and find myself eating things I shouldn't - but when I do, I give myself grace and understand that addiction is a constant battle. Each decision is an opportunity to grow and become a better person, which is what I strive for everyday. My weight loss is an ongoing journey that I hope will continue to lead to a healthier me.
When Amanda and I met, we were both deep into our own personal weight loss journies. Teaching each other about our fitness passions was the theme of most of our dates. We hiked, rode bikes, went roller skating and she eventually convinced me that I should go for a run with her. I had done a 5k race by this time, but I walked a good portion of it. I really wanted to run. I would daydream about it, but I just didn't know how to get started.
One evening, Amanda told me this was the day I was going to run one full mile without stopping. I was so smitten with her I couldn't say no. I chased her down a trail, every so often breathlessly telling her I needed a break. She never slowed to give me that break until I had actually ran two consecutive miles!! It was exhilarating! We ran together every chance we had after that. It was easy to run while with Amanda. She got me like no one ever had and I loved to be on the trails with her. I knew when I was planning on asking her to marry me it was going to be on a run at Mounds State Park. It took me a really long time into the run to get the courage to stop and do it. By the time I finally did it was sunset, which only made it more magical. Life has taken us a long way from that trail. It has been the most epic of adventures with the best friend I could ever have asked for.
7. How many miles have you and Kala shared to date? What races or adventures do you have planned next?Kala and I have run over 800 miles together with no chances of slowing down. We are on the cusp of completing the Ornery Mule Racing “Freeze My Ass Off” 400 mile winter challenge - our biggest adventure yet! We will have run 400 miles in the span of 3 months. We are training for the Hennepin 50k in October (a big goal), but only a stepping stone in our goal of completing the 100 mile race together. Someday, we would like to complete a triathlon. We are up to any challenge put before us, and look forward to many years of running as a team.