Robyn Schneider was a VP in non-profit human services management and later worked in legislative affairs as an advocate for autism services. She has devoted her life to advocating and helping to improve outcomes for children and adults on the autism spectrum, as well as promoting the benefits of exercise for individuals with autism and other medical conditions. Robyn has written articles and blogs on topics related to autism, and she and family have been featured in numerous major media outlets including, ABC’s Good Morning America, World News Tonight and The New York Times. You can read more about Robyn and her family by visiting: www.autismrunners.com and www.robynkschneider.com.
Autism Speaks Staffer Kerry Magro sat down with Robyn to discuss what she's doing today to help our autism community...
Kerry Magro: Hi Robyn! First off, can you tell us a bit about your new book Silent Running: Our Family's Journey to the Finish Line with Autism?
Robyn Schneider : Thank you Kerry! Silent Running-Our Family’s Journey to the Finish Line with Autism is my memoir. My story takes readers on our journey from a double diagnosis of autism, to the finish line of my twin sons’ first marathon. It’s a story of hope, and of never giving up, even during the most heartbreaking times when we faced extreme behaviors on a day-to-day basis. Partnering with other parents, my husband Allan and I became founding parents of the Genesis School, a behavioral based school exclusively for children with autism on Long Island, in New York. But shortly thereafter, at five years old, we realized that our sons, Alex and Jamie, would have autsim for the rest of their lives. We quickly shifted gears, and with perseverance and commitment, we found an outlet for my sons that brought them happiness. That outlet was running. My story is about how my family is healed and made stronger every time we run together. It is about how running changed not only my sons’ lives, channeling their acute anxiety and their obsessiveness; not just my husband’s life, who successfully manages his symptoms of Multiple Sclerosis with vitamins and miles on the trails near our house; but my life, too. Six years ago, while undergoing chemotherapy for breast cancer, I laced up my own running shoes for the first time and headed out the door, determined to run my way to recovery—for my family and for myself. And I haven’t stopped. Silent Running is about my family, my marriage and my friendships—how we have leaned on one another through the most devastating times and how we were always able to return to hope. Silent Running has just been released for Autism Awareness month, and is available at www.triumphbooks.com/silentrunning and wherever books are sold.
Kerry: How did getting your boys involved with Team Up! with Autism Speaks come about?
Robyn: As a family, we have supported Autism Speaks for many years, and have attended the Autism Speaks Walks at Jones Beach religiously. So when Team Up! with Autism Speaks emerged, it was only natural for us to have Alex and Jamie run with Team Up! in races to raise awareness and funds for the organization that supports so many individuals on the autism spectrum. I was so proud to have Alex and Jamie be part of Team Up and run to support those on the autism spectrum. We are a running family, and we look forward to running many more races together with the team!
Kerry: What do you think helped get your boys to where they are today?
Robyn: I have recently been told by professionals in the autism field that know my sons well, had Alex and Jamie not been in a structured ABA (Applied Behavior Analysis) program, they would probably not be living with us at home right now, and might even possibly be dead. That was a shock to us. Both my husband and I are committed to choosing therapies that are scientifically proven to ensure the most success. We had no time to waste when my sons were young. I believe that ABA saved them. I also believe that their success at running has been the true testament of this. It shows us all that even with severe autism, we can still celebrate successes. Alex and Jamie continue to have extremely challenging and oftentimes self-injurious behaviors. But we face the challenges head on, and revel in any triumphs that come our way.
Kerry: What's the most important thing you think people should know about autism?
Robyn: Autism is a family disorder. It not only affects the individual with the diagnosis, but the family as a whole. As I wrote in my book, Alex and Jamie have had many years of severe behaviors, and continue to have these behaviors today. We take every day as it comes, and with the help of dedicated professionals, we try our best to understand the function of the behavior first, then implement a behavior plan to address it. Sometimes it feels as if we are putting out a forest fire; as soon as one behavior stops, another one emerges. But then, on another day, we are watching our sons cross the finish line at a race, smiling widely, and I am grateful. I know that I will experience that joy when they cross the finish line at the 2015 Boston Marathon on April 20th.
Kerry: What can we expect from you next?
Robyn: Well, I truly loved writing my memoir. It was a profound experience for me; I cried and laughed as I was able to relive some of the most intimate and emotional moments in my life. Since my book just came out, I will be busy with it’s promotion for the next several months and in doing so, I’ll be raising awareness of autism. I plan to continue writing articles and blogs for various media outlets on autism related topics, sharing my experiences with others, with the hope that I can offer some help to others that may be struggling. I will also be continuing to advocate vigorously for better services, and more funding; especially for adults on the spectrum and those with severe autism. I’ll be following the lead from Autism Votes; advocating to secure passage of necessary legislation to improve the outcomes of children and adults on the spectrum. And lastly, I will be continuing to devote time to developing and securing ideal residential options for my sons, and others, so that they may enjoy a dignified life when my husband and I are no longer able to care for them.
Learn more about Robyn's book below...