“I wish I could tell them how I feel”
Four years ago, Mansah Gaisie Barnes heard the words that are the nightmare of so many modern mothers. Her son, then three, was diagnosed with autism.
Her son experienced some communication struggles, and was referred to a doctor by the nurse at his pre-school, who said he had displayed several symptoms of autism. After the first doctor broke the news to Barnes, a second opinion confirmed the initial diagnosis.
Frustrated, scared, and unsure how to proceed, Barnes enrolled in the School of Education’s Special Education program to pursue a master’s degree. She felt so helpless, not only because she didn’t fully understand the disorder, but also because she faced a cultural stigma about it (she hails from Ghana). She felt trapped; she didn’t want to tell her family or friends, but wanted desperately to help her son. So she decided to learn all she could about the disorder.
“I wanted to get my master’s in Special Education so I could understand the reasoning behind my son’s autism, and what to expect from him behaviorally,” Barnes says.
Barnes said she began reading books on the disorder as soon as her son was diagnosed. Her reading on the subject intensified in her graduate courses. Poring over these books, Barnes noticed a void: there was very little information on autism that was approachable and relatable. A lot of it contained medical jargon or clinical terms that were not easy to digest.
“Most autism books are textbooks, and they’re very difficult to get through,” Barnes said.
To help her son—and families everywhere with autistic children—she wrote a book, Yooku My Brother — The Enigma: Autism. Her goal in writing the book, which is fictional but contains portions inspired by real events, was to help everyone understand autism—even the children diagnosed with it.
“I wrote this book so even a child could pick it up and understand it,” Barnes says.
Through independent research in the Special Education program, she has come to better understand autism. She is able to identify the challenges her son faces, and now knows how best to respond to specific situations. But mostly, it has made life easier for everyone in her family.
“My son has two older brothers. They now better understand what he’s going through, and his father gets it, too,” Barnes says. “Some of the research I’ve done has helped me understand my son’s behavioral patterns, which I can now explain to the rest of the family.”
In so many ways, Barnes is giving a voice to those who struggle to express their own.