Author of Silent Running: Our Family’s Journey to the Finish Line with Autism

By Sabrina Freeman, PhD, ASAT Board Member

_DSC1643Sabrina: First of all, I’d like to thank you for writing this book. I think that it is one of the most honest books I’ve read on autism in a very long time. I’d like to ask you a few questions, if I may, to let our readers know about this exciting book.

Robyn: Thank you so much for the compliment! I’m honored to be interviewed by you and to talk about my book with ASAT readers. I have been a supporter of ASAT for many years.

 

Sabrina: What motivated you to write this memoir, and open up your heart and your family’s life for the world to see? Your candor is very refreshing.

IMG_1510 copyRobyn: There were several motivating factors that led me to write my memoir. The first is a very personal and emotional one. I wanted to leave a legacy for my sons. Although they will never be able to read my book, nor will they know the significance of their story being out in the world, it is my gift to them, and that makes me incredibly happy. I also know that their story, and our journey, will inspire many people; not just parents of children with autism and other special needs, but anyone who has faced adversity in their lives. My hope is that my book will offer something of value to everyone. And lastly, I wanted to reflect on the moments in my life that were imprinted in my heart and mind, and by doing so I was able to honor the people that I care so deeply about, and to whom I am so grateful for their love and support.

Sabrina: What I loved about your book is that you describe the successes and the ongoing challenges of your journey. Did you have any hesitation here? If so, what was the internal dialogue or the conversations you had with your spouse about this issue specifically and about the issue of privacy for your sons? The reason I ask this question is that I grapple with these issues as well.

Robyn: I had many moments of hesitation. There were times I wanted to omit certain scenes that were heartbreaking and embarrassing. But I had two wonderful people working with me during the writing process. My husband was very supportive in agreeing to be as honest as we could. We committed to one another that it would be our story – the true story. The other person was Kate Hopper, an author, editor and teacher, who helped me to feel comfortable expressing my most inner thoughts and feelings and getting them down on paper.

Schneider_Family_Portraits_HR_10_cc copy 4Sabrina: Many parents of children with autism have interesting stories to tell; however, it’s one thing to have a story, and quite another to tell the story in a way that is compelling. How did you take your memoir and turn it into a page-turner? I felt like cheering with every race result you provided, and crying with every setback you experienced.

Robyn: Thank you, Sabrina! I felt that my life has so many unique twists and turns – a double diagnosis of autism, debilitating obsessive-compulsive disorder, extreme anxiety, multiple sclerosis, breast cancer, family relationships, celebrations and tragedies, running, and struggling to persevere through some of the most stressful times. Because of this, I thought my story would resonate and touch a chord with readers having experienced some or similar aspects of my story.

Sabrina: Did you ever think of giving up in the middle of writing your memoir? You describe a particularly hard time when you were hiding in the bathroom to avoid being injured. I can’t imagine coping with this type of scenario and then being able to write my memoir about this experience.

Photo 20 (Alex w NYC Marathon metal) copyRobyn: This was one of the scenes that I was hesitant about including in my book. At first, I didn’t want to expose my son Alex this way. It was hurtful enough living through that period in my life and I never talked very much about it. But I wanted to be truthful, and I felt that other parents of children with autism, particularly those with severe autism, could relate to these kinds of behaviors and the stress that families face on a day-to-day basis. But I also wanted others, who don’t necessarily have autism in their lives, to peek inside ours, see our reality, and understand our challenges. We are just tying to cope and make the best decisions for our sons while providing a quality life for them.

Sabrina: In your book you speak about the unsung heroes in your twin sons’ lives. How did you find these people? Was it difficult?

Robyn: I consider myself so very lucky that these kindhearted and selfless people came into our lives. When Alex and Jamie started running with the Rolling Thunder Running Club, we met some amazing running coaches. Kevin McDermott is the one that took Alex under his wing, tamed the “wild colt” and trained him to become the incredible runner he is today. Then, through personal contacts, we met other athletes who wanted to run with my sons, and these relationships have led to wonderful friendships. My husband and I are so grateful to them.

Sabrina: I know that you had both your sons in an intensive behavioral treatment program, and then in a school that uses Applied Behavior Analysis (ABA) to work with children afflicted with autism. Was this behavioral orientation at all relevant to teaching your sons how to run a marathon?

Photo 15 (at 22 Family) copyRobyn: Absolutely! I truly believe that the principles of ABA helped my sons “learn to learn” and enabled them to apply those same lessons to running. And their running coaches were able to use ABA teaching strategies in their training. It has had a remarkable effect on them.

Sabrina: What I particularly respect about your book is the fact that you were so forthcoming with your family’s experiences and what came across was that although you have invested in the best treatment available, your sons continue to face many of the significant challenges presented by autism. Was it difficult to paint your reality? Even though both your sons have achieved so much in life so far (and they’ve got much more that they will achieve in the future), could you address the difficulty in describing the day -to-day challenges as well?

Robyn: Once I committed myself to telling the real story of the challenges that we faced on a moment-to-moment basis, writing was cathartic for me and gave me a sense of peace. There have been many books written about children with autism who have overcome some or most of their symptoms. However, for those with severe autism who have not been so fortunate, I felt it was important for me to share our reality. And although Alex and Jamie have achieved so much through running, they have done so because of their early training in an ABA program. I hope that readers will appreciate our struggles and better understand the needs of children with severe autism.

AllanSabrina: Did you feel that the amount of work put into writing this book was worth the effort? If so, could you describe the reaction that makes you feel this way? What was your biggest challenge, and your biggest reward?

Robyn: It was an enormous amount of work! It took months and months of late nights, deadlines, and reliving all the moments of our journey. It was truly an emotional rollercoaster for me. The biggest challenge was carving out the time to write. I had many nights during which I was writing past 2:00 AM but it was worth every moment. Silent Running is the memoir I always dreamed of.

Sabrina: I don’t have to tell you that, today, the publishing industry is full of books on autism. The fact that you found a publisher is amazing! Once you had this unbelievable true story, how did you actually find a publisher who was prepared to work with you? Also, how did you get into Good Morning America and into the New York Times? That’s impressive!

silent runningRobyn: I am truly lucky to have found a wonderful agent that saw the potential in my story and believed in its power. Triumph Books believed in me and my story, and shared my passion and enthusiasm right from the start. As far as the media outlets are concerned, there has always been an interest in our story from the very first article I wrote for our local paper years ago when my sons participated in the 1500 meter race in the Special Olympics. Alex won first place and Jamie won second place. I was so excited that I had to write about it. Since then, we have been very fortunate to have had such wide coverage on my sons over the years. I am eternally grateful to all the media outlets that have featured my sons and our story so eloquently.

Sabrina: If you could give any advice to parents, what would it be? I’m sure many parents with children on the more severe end of the autism spectrum would be very interested in any words of advice that you may have.

Robyn: My advice is to keep hope alive and try to stay positive. Surround yourself with people who care, and professionals who can offer guidance and support. Follow through with recommendations. Explore activities that you believe may enrich your children’s lives and make them smile. And most importantly, be smart and do your research. ASAT is a valuable resource to ensure you are making decisions that are evidence based.

Sabrina: Is there anything you’d like to add that we have not yet covered in our interview?

Robyn: Sharing my journey with ASAT readers has been my pleasure! I only hope that my story can offer some insight, value and strength to families living with autism.

Citation for this article:

Freeman, S. (2015). Interview with Robyn Schneider, Silent running: Our family’s journey to the finish line with autism Science in Autism Treatment, 12(3), 2-5.

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