Local author provides insight into Autism and Asperger's Syndrome at age 12
Immediately after Craig Rafail turns off the lights to his son Dyllan's bedroom, the young boy responds, “Dad, why did you turn the dark on?”
“That was one specific time I can recall thinking to myself, 'Wow, he sees things totally differently. His mind is so unique,'” Rafail, a physical education and science teacher, said while recalling a memory of his son Dyllan, now a published author at the age of 12.
Dyllan has Asperger's Syndrome a form of autism, and according to his recent book, a special power. See, Dyllan fits the atypical mold of a superhero. He is endowed with special abilities beyond his control, but he struggles with the power's positive and negative effects and tries speaking for every child in the process.
The idea of turning his story into a book started out with Dyllan's desire to draw attention to living with autism and an opportunity through Van Buren School District's promotion of reading and writing.
“Each student had the opportunity, if they chose, to write a book and enter their work to be selected,” Rafail said. Dyllan's book, “Super Senses: A child's description of the challenges and rewards of living with Autism/Aspergers”, was selected as a winner, and the arduous the process of being published began.
The motive behind spreading the word, according to Rafail, was to help erase the one of the worst aspects of life with Autism, yet the easiest to treat: misunderstandings.“Dyllan set out to complete this task because he wanted to help erase misunderstandings about autism,” Rafail said. “That can often be the most frustrating thing, just being misunderstood.”
Although Dyllan is not initially outspoken, especially to strangers inquiring about his “disorder”, the introduction to his book exceptionally describes what his life is like and why he wrote about it. “Every day I live with what I call 'super senses',” Dyllan writes.
He is careful to highlight what the medical community calls his situation, however. “ My family calls it mild autism and sensory integration disorder.”
Special education teacher Liz Sheilds said that the voice Dyllan is giving children with autism can give the public a view of the disorder that is rarely seen. “People just need to understand that when children are behaving differently due to autism, it is almost always a reaction,” Sheilds said. “Their senses are responding to what is happening around them; it isn't just random behavior.”
Sheild's collegue, speech pathologist Emily Petrous, said that misunderstanding are generally spawned by the unique reactions autistic children exhibit in certain social situations. “Oftentimes a child won't pick up on certain body language or interpret converstional ques accurately,” Petrous said. “It is important to keep in mind that they are not being difficult but simply have a different view in certain aspects of the senses and how they are used to communicate.”
Dyllan directly addresses this point in his introduction, saying parents and teachers may initailly react to autistic children with frustration. “I hope my book will help people understand,” Dyllan writes. “People say I am pretty good at explaining how I feel.”
Both Shields and Petrous agree the awareness and understanding spread by Dyllan's work is nothing but progressive to further public understanding about autism and Asperger's. “It's really fantastic,” Sheilds said. “ Autism awareness month is May, but it is almost as though it should be every month.”
The book has been embraced by many of its readers and sold out of the original 500 copies in the first week of publishing. The standpoint from which the book is written, that of a child living with sensory intergration disorder, is a contributing factor to the interest being generated by Dyllan and his story.
In his book, Dyllan works to connect with other children with autism by telling how autism affects his senses and how he uses them to communicate. For example, Asperger's causes heightened interest in certain areas during childhood, such as art, math and science, but some social skills may be affected.“I love art,” he writes. “Being creative helps other people to understand me!”
One of his concerns while writing the book was reaching out to those who struggle with more severe autism and the parents of these children who may misunderstand what their children are going through.
“Some days I feel confused like static on a TV,” writes Dyllan. “My thoughts won't clear. I wish I could just turn the channel and make it go away.”
The book also describes the sensory images that comes with a diagnosis, of “super senses”, complete with examples. “I hate being hot,” he writes. “ It's like I am an ice cream and my thoughts are dripping down into a puddle on the ground.”
Dyllan's anecdotal evidence of the difficulties of Asperger's further build the rare advantages he also enjoys. “It makes me feel special like, maybe, I get to feel things more or better than other people,” Dyllan writes.
And, like a true super hero, Dyllan sticks up for children like him and children who suffer from severe types of autism. “There are many children who have challenges much bigger than mine,” Dyllan writes. “I want to be brave like them. Because life isn't always easy for me, I worry about other people a lot.”
Melinda Rafail, Dyllan's mother, has grown to know what daily life is like for her son and how he deals with his unique senses. She helped during the writing process by aiding Dyllan with more tedious tasks like editing the book. “There were times when all of it became overwhelming,” she said. “Dyllan had a specific image in his mind and a certain way he wanted to depict how his brain sees things, so there were numerous drafts.”
Perhaps a contributing reason for the book's success is the underlying concept Dyllan had for his creation. He started with a picture on each page (Dyllan both wrote and illustrated “Super Senses”), and built a fitting body of text around it. “Images help bring to life some of the feelings Dyllan has,” his mother said.
As for dealing with his local limelight, Dyllan wrestles with the attention he is getting. On one hand, he said he feels “pretty good” that his book is finished and awareness is being raised thanks to him, but, on the other hand, he could do without the crowds of people.
A symptom of autism is uncomfortableness around chaotic groups of people, such as the recent book signing Dyllan headlined. He managed to sign over 300 books. He left, however, still puzzled.
“He kept telling me, 'Mom, I don't get why so many people would want my name on their book,'” Melinda said.
Perhaps Dyllan will need to practice his signature. “We're talking to an organization right now who is interested in buying a mass amount, and we're already ordering another 1,000 since the first 500 went in one week,” Craig said.
Dyllan's determination and unique situation are something he not only lives with, but embraces. The struggle being a pseudo-superhero is taken in stride by Dyllan.
His father said, “One day a commercial to cure autism came on television and Dyllan told me, 'They're not taking mine away.'”