Living with autism, Robbie Clark has struggled to tell his story.
The 23-year-old Baton Rouge native was labeled nonverbal as a child, and when he could talk, his disorder made it difficult to express his actions, thoughts and feelings.
He couldn’t always explain why walking on his tiptoes soothed his feet. Or why carrying a pencil comforted him.
In his book, “In My Words,” Clark writes what he couldn’t say.
“It’s a story about times and things I remember,” Clark says. “I try to explain to the people why I might do things, and how I might feel when things happen.”
Challenged by his mother to write a book after graduating from high school in Huntsville, Alabama, Clark told his story in short vignettes, relaying the happy moments when he found support from friends and the harsh times when teachers or other kids lacked empathy and understanding.
He writes about the time an elementary school teacher confiscated his plush stuffed animals. Like many children with autism, loud noises severely affected his mood, and his skin was very sensitive. Carrying the animals gave him comfort in the hectic hallways and classrooms.
Eventually he replaced the animals with a pencil, which was more socially acceptable to carry.
Another time, in second grade, other students were clapping and bunching together during a lesson on compound words, and he couldn’t take the stimulation.
“It was hurting my ears, my eyes were burning, and the feeling of other kids brushing against me felt like needles,” Clark writes.
His sharp memories of preschool and early elementary school surprised his parents and his former teachers.
Tanya Bourgoyne, a speech language pathologist at the Emerge Center in Baton Rouge, first met Clark as a 2-year-old. After reading his book, Bourgoyne felt she better understood children she has worked with for two decades.
“I get to see now the day-to-day trials and day-to-day tribulations these kids experience and the little things they remember,” she says. “It amazes me to see what he remembered and what really impacted him.”
Clark’s story is similar to many who live with autism, but it is uniquely his.
After his first birthday, his parents, Maggie and Rob Clark, noticed some problems. He had difficulty making eye contact, and he hated both hot and cold foods.
“Everything had to be lukewarm,” Maggie Clark says. “He didn’t like brushing his teeth. He didn’t like paint on his fingers.”
At first he spoke, learning words like “mom” and “mama.” Then, at 18 months, he stopped.
“He would sit there and ramble,” Maggie Clark says. “He was having a whole conversation by himself, but you couldn’t understand any of it.”
His communications problems bred frustration, Maggie Clark says, so he started speech therapy. Local doctors wouldn’t give a diagnosis. The Clarks mailed a video of his behaviors to a specialist in Dallas.
A few weeks later they received a letter that read: “Robbie shows characteristics of autism.”
“My very first thought was of the movie ‘Rain Man,’” writes Robbie’s father, Rob Clark, in the book. “That was my only knowledge of autism at that point.”
The Clarks read everything they could on autism and decided educating Robbie Clark in mainstream classrooms was their top goal. But that plan faced opposition.
After his preschool said they would not advance him into the next grade level, Robbie Clark began attending preschool at the Baton Rouge Speech and Hearing Foundation, the nonprofit that became the Emerge Center. Enrolled in preschool half the day, he took occupational therapy and speech therapy there, too.
“The Baton Rouge Speech and Hearing Foundation pretty much made Robbie educatable,” Maggie Clark says.
When he started elementary school, he found supportive teachers early on. Later, some teachers wanted to move him out of mainstream classrooms.
When Robbie Clark was 7, the Clarks decided to find a place where Robbie Clark and his sister, Emma, who was two years younger, could attend public school together. Rob Clark, a golf pro at country club, found a job in Huntsville, Alabama, and they moved.
Although they faced challenges in Alabama, the school administration supported their education goals, and Robbie Clark graduated as a mainstream student.
Today he works part time and lives with his family. He and his mother travel to conventions and book signings, spreading their story of a family living with an autism diagnosis.
“Hopefully they will be able to understand me a little more,” Robbie Clark says, “and know that I remember what people have said and done.”