MGH: Can you give a specific anecdote (no need to name names) about what inspired you to work with autistic children? Something you haven’t shared before? What moved you emotionally? Can you explain how your first encounter with autistic children occurred and how you feel connected (if that is the right word)?
Jamie: My first encounter was with an older teenager with Asperger’s, named Casper [can make up another pseudonym if you want]. He was extremely shy, painfully shy in fact, and liked to hide in closets to get away from other people. But his mom and therapist told me he was “very lonely” and would have liked to have a “friend”. I was only 12 at the time, and I had volunteered to shadow his therapist and peer support, so she matched me up with Casper. Our first session went very poorly at first, until the therapist brought out some special cupcakes. They were a very specific size, shape, flavor, frosting – everything had to be a certain way, because Asper would only eat them if they were the right ones . I said to her and to Casper, I like exactly the same kind of cupcakes!! We bonded over that shared taste, and our cupcake-connection grew from there. After that session, I always brought those special cupcakes with me — same number, same size, same exact shape, flavor and frosting down to every detail, even the same container. Months later, after many sessions, I heard that Casper had started asking for “Jamie his friend who also likes his iPhone.” I was really touched, and so was the therapist. We were also surprised as the outcome was completely unexpected.
MGH: How has your inspiration changed over the years – what is motivating you to do what you are doing now? How has your involvement in various projects changed over the past few years, since you were first interested in helping with autistic children?
Jamie: In the beginning, everything I was doing as a volunteer was one-on-one and kind of very personal — one autistic child/teenager at a time. As I got more involved, and did more research on how common ASD was, and how hard it was on families, both financially and emotionally, I began to think of ways to help as many autistic individuals as possible, versus just one child at a time.
MGH: What was it like meeting Dr. Birtwell? What was it in particular about this project you were eager to fundraise for? In what ways does supporting her work resonate with you/fulfill or motivate you personally?
Jamie: It was beyond exhilarating to finally meet Dr. Birtwell! It was one of the greatest milestones for GoFAR. She’s not only in charge of the research behind Affinity Therapy, which I totally subscribe to; she also believes in the proper use and research of autism-focused technologies. Like me, she believes that technology can have a life-changing, transformative effect, and can empower and improve the lives of everyone affected by ASD. It was just great to hear her talk so passionately about her meaningful work — we both believe technology to be a promising way of delivering much-needed interventional therapy. She’s on the cutting edge of so many things we believe in. She’s precisely the kind of researcher we always wanted to work with. She also gave me lots of really good academic papers to read, many of which I used for my upcoming blog-post for the MGH Clay Center, titled “Emerging Technologies and the Frontiers of Autism Research”.
MGH: How do you describe this passion of yours to your friends? What is their reaction?
Jamie: I don’t. To be honest, I have never told a single one of my friends about my work in autism, so I don’t know how they would react. It’s something I’ve been quiet about up until now, although that may change when GoFAR goes public. But honestly, I’m not sure how I would go about explaining, because no one in my extended family has ASD. I don’t even have any family friends who are autistic. That said, the reason I got interested in this cause is because I consider myself a child of great privilege and good fortune, and helping kids and others who have it harder feels like a good place to start and a right thing to do. It’s my way of giving back, of counting my blessings. People with autism are often misunderstood and bullied, and I want to help fight against that by helping others to understand and appreciate everyone on the autism spectrum.
MGH: What are your goals in working with Mass General and on this project in particular – what would you like to see happen as a result?
Jamie: First, I would like to see my wonderful sponsors—the Endicott Family and Mr. Herb Chambers—thanked for supporting GoFAR. They took a chance on a kid, and on GoFAR, and we are hugely appreciative. I would also like to see the same things as Dr. Birtwell, Mr. Suskind and everyone else who believes in Affinity Therapy! The current research project is the first pilot study for the science behind Sidekicks (which is Affinity Therapy embodied in a specific technology). I hope for a great data set, so we can pave the way for the next and larger research studies at the MGH. For now, there is only compelling and exciting anecdotal evidence, which is inadequate. My dream is ultimately to support truly translational science, from “bench to bedside,” which means the whole journey from the concept to something people use every day that helps them.
MGH: Can you give some examples of how your involvement in GoFAR and in the Lurie Center in particular have affected your life? And your ideas about your future?
Jamie: GoFAR is my very first taste of building things in real life—that is, life outside of school. I never knew how complicated it is to run an organization legally and properly, how exceedingly difficult it is to build a website pixel by pixel, how long every process takes, how tricky it is to fundraise, how hard it is to beg for small favors. Everything is far, far more arduous than I had expected two years ago! But it’s also very rewarding and I’m learning a lot. Stamina, perseverance and a sense of humor is key, but it’s OK to dream, and there is no minimum age when it comes to doing good.
MGH: How do you like to spend your time when not working on GoFAR (favorite subjects in school, hobbies, technologies/games)?
Jamie: I watch and analyze NFL Football and play with my beloved Pomeranian puppy “Brady.”