A novel without a plot
Joji Reynes-Santos’ brave new book introduces the reader to the complex mind of people with autism.
Last September, Adarna House launched Inside Daniel’s Head, a brave new book written by Joji Reynes-Santos, a special education teacher and teacher trainer who, for the past 26 years, has worked with persons and groups with diverse learning needs — from special children with learning disabilities, to inmates at the New Bilibid Prison’s maximum security compound.
It is “a novel without a plot,” written from the point of view of a 12-year-old boy with autism. Daniel is a composite of many children with autism Joji has worked with and learned from in her years of teaching, the many Daniels whom she says in the book’s dedication page, “were and are still my real teachers.”
It should be an easy read, 166 pages of text — the writing is conversational — in double space with illustrations, but it is not. It is also a difficult book to write. Daniel’s thought process is complicated. Inside Daniel’s head is jumble of ideas, plans, desires, feelings, colors, visions, likes and dislikes, and rules that come and go, and merge and clash unbidden. And the confusion is expressed in words and actions that are painfully direct and rigid, and uncontrollable temper tantrums when he doesn’t get his way.
But Daniel is not a robot. Although his behavior is often triggered by certain stimuli, it is painful to see him trying mightily to control what he knows will be a fierce and unwanted reaction to a picture, a color or a word that he is helpless in preventing from happening.
Joji lifts the veil of mystery as she introduces the reader to the complex mind of people with autism and shows us, via Daniel’s head, the spectrum of behavior of persons who have this condition.
It is quite a feat in story-telling, going through the meanderings of the autistic’s mind. Although she draws from her knowledge of a number of people with autism, choosing events and situations that would tell the story — she pegged the daily challenges of a person with autism on one person — the 12-year-old Daniel.
Joji said she wrote this book as a reaction to the widespread ignorance about autism in society, which, she said, is evident in the way persons with autism are portrayed in the popular media as hand-flopping, eye-rolling, non-verbal and out-of-control. She notes that even her thesis panel for her Masteral degree (her thesis was “A Reading Program for Persons with Autism”), did not have an adequate understanding of autistic behavior.
In Joji’s book, Daniel goes to a regular (but inclusive) school where he learns lessons and interacts alongside regular (not differently-abled) children.
Inside Daniel’s Head was originally a short story that Joji submitted to Kuting, an association of writers of children’s books, which recommended that she develop it into a novel for young adults. As a fellow of the Kabanata Young Adult Writers’ Workshop, she went through mentoring for six months, writing and rewriting her manuscript, guided by published authors. It took her two years to decide that her novel was done.
But before releasing it to a publisher, Joji made sure it was vetted by her peers — a special education teacher, an occupational therapist, and a speech therapist — as well as a parent and a high-functioning person with autism. It was finally published by Adarna House and launched at the Book Fair in the Mall of Asia last September.
A Special Education graduate of the University of the Philippines College of Education, Joji Reynes-Santos is program director of Candent Learning Haus in Las Piñas, an inclusive school she founded with her husband Benjie. Every summer, she organizes an inclusive annual summer camp called Camp LIFE. She is currently working on her doctorate on the History and Philosophy of Education. Autism spectrum disorder (ASD) is a neurological and developmental disorder that begins early in childhood and lasts throughout a person’s life. It affects how a person acts and interacts with others, communicates, and learns. It includes what used to be known as Asperger syndrome and pervasive developmental disorders. (www.nimh.nih.gove) ASD is a broad range of conditions characterized by challenges in social skills, repetitive behavior, speech and non-verbal communication. Many people with autism also have sensory problems, such as an aversion to certain sights (in Daniel’s case, a hearse), sounds (loud noises), and other sensations. But as with Daniel and other differently-abled kids, expert and loving teachers, parents, coaches and the community, can help create a safe environment that will empower them to live productive and happy lives. Inside Daniel’s Head gives us an idea how.
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Inside Daniel’s Head is available in Fully Booked.
