Journey with Julian
The first thing one usually notices is his smile: genuine, inviting and warming. Then it’s his eyes—dancing with wonderment and innocence. As you gaze downward, awaiting your clasp, you are welcomed into his world by his outstretched arm and a handshake. “Hello. I’m Julian.”
He is five feet nine inches tall, slender, but not skinny, in build. Most that greet him comment on how handsome he is. He has prompted not a few young ladies to turn their heads in double-takes upon seeing him. He has an affinity for Disney animated movies and animals. Though he is nearing his twentieth birthday, socially, there are aspects of his persona more in line with that of a ten-year-old.
He is my son and he has autism. Our family—my wife, Martina; Julian and his younger (by two years) brother, Jared—have been on this journey, through the world of autism, for nearly sixteen years. It’s been unpredictable, enlightening and challenging. The highs have been soaring and the lows almost unbearable.
When we first received the diagnosis, we were not surprised. After prior conversations with friends who were doctors and several behavioral factors we had noticed, we knew, as Martina put it, “Something’s up with our son.” I would encourage all parents of young children who evince signs of unconventional development to be aggressive and dive in headfirst. If it is autism or another
developmental disorder, it’s better you know early and begin to address it rather than pretend it’s simply a phase.
I will never forget the determination in Martina’s voice. She was the one who first began to think about this, and spoke with my Uncle Harold when Julian was about two-and-a-half. “Uncle Harold, I think something might be different with Julian.”
He replied, “Maybe it’s a stage, terrible twos?”
She remained firm in her position. “No, something is not right.”
And so began, though we didn’t know it at the time, our entry into the world of autism.
Through it all, what has fortified us are unwavering love and support for Julian, the inspiration we draw from his resilience and strength, a fierce belief in his gifts and abilities and recognition that, despite the obstacles, there are other families in the autism community who face far greater hurdles. Experts place the number of individuals with autism who are mentally retarded to be anywhere from 70 to 85 percent. Julian is on the high-functioning end of the Autism Spectrum Disorders continuum, and for that, we are eternally thankful.
Though I was encouraged to pursue this book by a close friend, Rohena Miller, to whom I can never say thank you enough, for understanding, long before I did, that our story was one that should be shared with the world, I never would have followed through with it if Julian were not okay with the idea. I don’t know that he will ever read this book, but I’ve had multiple conversations with him about the project. He will always know that it was born out of love and pride for him.
The book is a mixture of entries from the blog (“Journey With Julian”) that is the foundation for the book and stories with deeper insight into our world. I hope it helps everyone dealing with autism to realize that the issues they face are shared by others. None of us should feel that we take this journey, into the world of autism, without support and understanding.
When Julian was diagnosed at age four, in 1997, one in 10,000 children were diagnosed with autism spectrum disorder. In 2012, the Centers for Disease Control and Prevention released updated—and staggering—numbers. It’s now one in eighty-eight, with boys five times more likely than girls to have ASD. Given the numbers, it’s understandable why those of us in the autism community feel a strong need to raise awareness within greater society. We must, as a larger community, prepare to integrate this “tsunami” of persons with autism into our world.
I asked Julian what he wanted people to get out of this book. At first he didn’t really have a definite answer; this is not a topic he cares to spend much time discussing. However, I wouldn’t let the conversation go, and after gentle pushing and challenging, on my part, he finally offered this: “I want them to know I’m happy with my Disney movies and animals and that I will have a great life.”
There it was, all any parent could ever hope for—their child understanding who they were, finding comfort in that fact, and looking forward to a future of hope and optimism. It’s moments like that in which my love, respect and admiration for my son swells. His is not a complicated view; he enjoys the subjects and items that comprise his specific “interest community” (most persons with autism have laser-like focus on certain interests), doesn’t mind telling you about them, and derives unfiltered joy from being immersed in that particular world.
Julian has provided Martina and me with the full emotional experience as parents. For that we are forever indebted to our eldest son. He has made us feel “very” alive; no day with him is quite the same. As you read this book, I trust it will cause you to laugh, cry and to appreciate the world inhabited by the thousands of exceptional people like Julian.