The national autism advocacy organization, Autism Speaks, interviewed Malva about her new book titled, Benjamin Breaking Barriers: Autism – A Journey of Hope. This interview is posted on the homepage of the Autism Speaks website.
Q: How did you come up with the title of your book?
A: When Benjamin was a toddler, he became silent and withdrawn, losing the tiny bit of language he had acquired, and his sunny nature become obscured by what seemed like a dense fog. He was driven to obsessive behaviors and was often taken over by strange physical movements. When I learned that he had regressive autism, I immediately jumped into action, trying in every way possible to reach him, to develop communication, and to foster behaviors that would allow for skill building and social interaction.
My hopes for Benjamin’s future fueled my creativity and determination, but as the years went by, I naturally ran up against depression, exhaustion, and therapy burn-out. Nevertheless, I continually strove to see the glass half full, and I dug deep to keep my inner fire burning. Fostering Benjamin’s growth was—and continues to be—a journey of hope, love, and faith.
Now, Benjamin is a young adult and, although he still needs much support, we have forged a path that builds upon his strengths: he has developed into an exceptionally social person with a talent for public speaking, and he regularly gives an educational presentation titled, “Living With Autism: Breaking Through Barriers.” In fact, you can see a short demo-video of him speaking on YouTube and can access our blog and more information through our website http://www.BenjaminBreakingBarriers.com When speaking, Benjamin shares his life-story, encouraging listeners to become more understanding and accepting towards the “differences” associated with autism. He also inspires people to tackle their own, personal barriers.
In my book, I share the nuts and bolts of how I worked with Benjamin, how I continually strove to awaken heart-felt connections in spite of his autism, and how I repeatedly re-invented my vision of Benjamin’s future, ultimately leading him towards his current success, which is defined by his satisfaction with life. The process has required both Benjamin and I to break through barriers: to overcome our inner hurdles as well as facing those that inevitably arise during interactions with the world.
Q: In the book you discuss the impact of early intervention. What advice would you give to parents with newly diagnosed individuals on the autism spectrum?
A: Hard as it may be to process the diagnosis of autism, to grieve, to vent, and to eventually reach acceptance, I urge parents to take immediate action. Your child needs all the support, therapeutic stimulation, and love that you can possibly provide, particularly in the early years when brain development is at its peak; this is your opportunity to make the greatest difference.
However, the brain continues in its capacity for change and adaptation, and we parents need to keep shaping and challenging our autistic children to grow and compensate for their disabilities as they move towards adulthood. At the same time, we need to be flexible and to define “success” in a manner that harmonizes with the particular child’s individuality, and we must identify the child’s gifts and develop his or her strengths. We are also responsible for being advocates, for helping our children to find their place in the world, all the while fostering an appreciation for what it means to be “special and different.”
Q: Both you and Benjamin seem to have a passion for music and theatre. How much of a role did that play in Benjamin’s life growing up?
A: Music has affected nearly every facet of Benjamin’s life. Right from the beginning, music was a means for touching Benjamin’s soul, and it gradually moved from being a playful activity to being a therapeutic discipline. Theatre, too, has been a therapeutic lifeline. Singing, learning various musical instruments, and rehearsing theatrical scenes has allowed us to work with speech and body language, to discuss interpersonal relationships, to build up self-confidence…the performing arts have nourished Benjamin, body, soul, and spirit.
Q: When did Benjamin decide he wanted to become a public speaker and share his message with others?
A: Benjamin’s first foray into speaking was an informal session with a health class in middle school. Hoping to counteract the bullying that was going on, the teacher invited him to talk about living with autism. Benjamin found that he enjoyed this, and once he got to high school, he was ready to do something more structured. At that time, however, he was having severe difficulties with OCD, tics, anxiety, and ADD; this precluded him from participating in typical theatre productions. We needed to fill the gap and restore his self-identity. So, we created a formal presentation which allowed Benjamin to be himself on stage and to access necessary supports (i.e. using a script). Clearly, the idea has worked. Benjamin has had standing-room-only audiences, and we are thrilled to be sharing our lifelong learning with the community.
Q: What is next for you and Benjamin?
A: Well, Benjamin would like to be famous; he envisions traveling and speaking to huge crowds. He loves to sing and act; he also cares about our environment and would like to be involved with various conservation efforts. For my part, I dream of our story reaching the greatest audience possible—making a positive impact, changing lives for the better. I am getting Benjamin’s presentation out on DVD and am exploring the making of a documentary film; interested persons are welcome to contact me.