Autistic youths breaking years of silence

On a recent Saturday, my son joined eight other teens in an online virtual party where they talked about music, played favorite songs and discussed their common interests. My son Josh shared the song “I’m Yours” by Jason Mraz, explaining that he likes it because “he has such a nice voice.” Others responded that they found it “cool” and “very easy to listen to” and shared songs by their own favorite groups including Ariana Grande, ACDC, Taylor Swift, and even a Gregorian chant.

If you were to encounter these young people in any other setting you might have a very different idea of their capabilities. Most of them are completely non-verbal but engage in loud vocalizations or inappropriate laughter. Some of them can speak but are limited to repeating lines from movies or TV shows. Most do not use eye contact or may cover their ears when you speak to them. Although there is no visual signifier that they are intelligent, loving, empathetic beings, they are quickly disproving the stereotype as they learn to communicate by using a letterboard and/or keyboard.

Josha Smith holds the board as her son Kaegan spells out responses

Josha Smith, who organized the party, says her son Kaegan used to be like many with autism who “script” or recite lines from movies or tv shows over and over. They may be classified as verbal but their speech is often not meaningful and also may not represent what they want to say or be capable of thinking.

“If I listened to Kaegan’s verbalizations like I used to, I would think he was a Wiggles fan with a little Blue’s Clues mixed in,” says Josha. “Now that we can communicate through the letterboard, I find out his true interests are trail running, hiking, snow shoeing, video games, anime, math, and history.”

The methodology these individuals are using to communicate is called Rapid Prompting Method or RPM. Developed by Soma Mukhopadhyay in Austin, Texas, RPM is a skill-building method where students are taught to spell answers within a ‘teach/ask’ format. In a typical session, students are given a few sentences at a time and respond to questions by choosing the correct answer from two pieces of paper. Once students have mastered paper choices, they move on to spelling answers by pointing to letters on a letterboard. More advanced students may transition to using a keyboard.

Experiencing a child spelling for the first time can be an emotional discovery for parents. Nikki Grubbs’ 11-year-old son Aulton attended his first RPM sessions last month, where she was surprised to learn that he can spell and add.

“It gave me confirmation that my son understands much more than most give him credit for. It has changed the way everyone interacts with him, in a positive way.”

The teach/ask format reduces anxiety by giving a framework to the lessons and focusing the child’s attention on academics. At the same time, by touching letters on a letterboard, it slows down the reasoning skills to help tap into language that is more reliable. Perhaps best of all, the child is being treated as an intelligent individual, often for the first time in their life, which can be a powerful motivating force.

And word is spreading. There are now a number of practitioners across the country and abroad who utilize Soma’s method. On a recent post to the Facebook group “Unlocking Voices — Using RPM”, there were responses from across North America, Europe, Asia, and Australia.

I discovered Rapid Prompting via the extraordinary book “Ido in Autismland” by Ido Kedar. Ido, like my son Josh, is completely non-verbal. In his book, he eloquently and painfully describes what his life was like before he was able to communicate, how he wishes he had been taught, and what helped him in his journey.

“When I was young I suffered daily from having a mind that couldn’t control my body well. It made it hard for people to realize I was intelligent,” explains Ido.

Like any autism therapy, this method is not a quick fix; communication does not happen overnight. My son and I work with the letterboard for 25 minutes a day, two times a day. After a year and a half, he is just starting to communicate with open-ended responses. But each word that he is able to spell is a revelation and encourages us to keep going.

He often shows his sense of humor. When asked recently what he had in common with his dad, he spelled “we don’t clean”. His responses can be emotional and gut-wrenching, such as his answer when asked what he wanted for Christmas — “a voice”, and his recent question to a pen pal — “have hope to marry?”

There are detractors to RPM who question how much the person assisting the child is actually controlling their spelling by moving the board as they point to letters. If you witness a session it is pretty clear that this is not what is happening and in later stages the child usually moves on to a keyboard where they are completely independent. However it can be hard to transcend decades of preconceived notions and understand that people with autism are just as intelligent as the rest of us. They just happen to have extreme movement and sensory difficulties that make the expression of that intelligence more difficult. If Stephen Hawking were only judged on his physical appearance and movements, would people assume him to be intelligent?

As the party was wrapping up, the teens shared their excitement at their newfound friendship and acceptance:

Bella commented: “As a typer I am a tad excluded from my typical peers. I feel accepted by you all.”

Kaegan responded: “I am also excluded but I have friends here.”

Umberto summed up their collective hopes: “Coming together — a start to acceptance.”

Let us all make sure Umberto is right. Not every book can be judged by its cover.

Amy Burnham Greiner resides in Tucson, Arizona with her husband and two children. She is a Public Voices Fellow with The OpEd Project.

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