With Blog, Teen with Autism Gains Voice
HIGHLAND PARK, Ill. — A few years ago, Mitchell Robins wasn’t able to tell anyone precisely what he was thinking. He lost the ability to speak when he was 4 and relied primarily on a system of pictures and limited sign language to tell his parents and caregivers what he wanted to eat or when he felt sick or how he wanted to spend his time. Then his parents realized he could spell.
Now Mitchell, 17, communicates deliberately, pointing letter by letter to a board that displays the alphabet. Ask him a question and his expression will flit between deep concentration and a jovial grin as he slowly spells his answer. Mitchell, who has autism and is nonverbal, said using spelling-based communication has changed his life.
“It changed everything because I could get my wants and needs met,” he spelled during a recent interview at his home in Highland Park, curled up in a couch corner while one of his therapists held the board at his eye level. “I am very happy people are finally figuring out how to reach people like me because it is a human rights issue we need to solve.”
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He was able to tell his parents that he wanted to start taking classes at the local high school and meet with friends at a coffee shop, where they talk about normal teenager things. Realizing he understood much more than they had ever thought, his mom said they went from reading him Dr. Seuss to Harry Potter “basically overnight.”
Last March, he started a blog about his life. By telling his story, Mitchell hopes to show the world that those who communicate differently shouldn’t be underestimated. He already has readers from nearly every continent.
“It shows you the huge capabilities of these individuals with autism who are nonverbal,” said Susan Robins, his mother, tears in her eyes as she spoke about her son. “They have huge capabilities, but we just don’t know how to access it, and this is a way to access it. Mitchell has so much to share, and we just didn’t know.”
Around seven years ago Susan Robins attended a presentation about a therapy called Rapid Prompting Method, which teaches nonverbal individuals to communicate by spelling. The therapy teaches students to answer fact-based and yes-or-no questions on a plastic alphabet stencil board before building up to open-ended questions on a flat paper-like letterboard, Susan Robins said.
Eventually, many spellers transition to independent spelling on an iPad keyboard or computer keyboard.
She was skeptical. In previous therapies, Mitchell hadn’t been able to select from a set of cards which one showed a happy face. When she voiced concern that Mitchell would be able to learn spelling, the parent of one of the presenters knowingly told her, “Oh, he knows.”
It didn’t take long for her to realize that Mitchell had been absorbing the world around him by reading street signs and books and even listening to his dad help his sister with algebra homework. He understood everything, he just didn’t have a way to tell them, she said.
“He was looking all the time, reading all the time,” she said. “The words are there, they’re all over the place. They’re outside the windows when you’re driving in your car, they’re in books and newspapers you have in the house. He taught himself to read.”
When he was first starting the therapy, he spelled to his sister that he loved her for the first time. Now he writes his mother letters thanking her for all she does. When they started to practice math, Mitchell already knew how to solve equations, he just needed to learn simple tables that he hadn’t been taught in school, she said.
Last semester, Mitchell earned a B+ in the business class he took at Highland Park High School, on top of a full online course load including advanced physics and social studies. He particularly enjoys learning about the civil rights movements of the 1960s.
There has been little research to back up anecdotal success stories for this type of therapy, but that doesn’t matter to Susan Robins after seeing the difference it’s made in her son’s life.
“It really changed things. Before, we loved him of course, but we would dress him and feed him and try to get him to smile, all these things but we didn’t know him really,” Robins said.
Mitchell sets his own goals during sessions with Taylor Janisch, one of several therapists who help him with schoolwork, life skills and communication. Recently he’s been practicing writing blog posts with fewer breaks and holding longer conversations. At the end of every session they talk about a topic of his choosing, Janisch said, adding that she considers Mitchell a friend.
No one touches Mitchell’s arms or hands or moves his board as he spells. Someone, usually a therapist or parent, holds the letterboard up to his visual field. His mother said he’s come a long way since he started the therapy to having what would now be considered open communication. It took Janisch over a year of building trust to become “fluent” with Mitchell.
“There are lots of people in the school system that are his age that are being asked, ‘show me the orange, what color is this, point to the spoon,'” Janisch said. “Can you imagine if you couldn’t speak or communicate at all, but you’re still you inside of yourself? You wouldn’t know what to do. All these people are trapped.”
After mastering the letterboard, Mitchell started learning to type on an iPad that speaks what he writes. He types his blog posts on a computer keyboard by himself. Spelling can be exhausting for people who struggle with motor skills, so he takes breaks, frequently flopping down on a blue beanbag in the corner of the office where he writes.
For quick requests, such as a bathroom break or drink of water, Mitchell uses sign language.
Mitchell said he blogs to help families of other people with autism who are nonverbal understand their capabilities. In a recent post, he wrote about the frustration he feels when people talk down to him because they assume he can’t understand what they’re saying.
Sometimes readers leave messages asking about the therapy and encouraging him to keep writing in the comment section of the blog. Mitchell said reaching people feels “amazing because I am making a difference.”
“I think people need to stop underestimating us because our perspective is as important as everyone else’s,” Mitchell spelled. “We are intelligent and amazing people who deserve the benefits of open communication.”
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