Giving nonspeaking autistic children a voice

Imagine growing up with the full capacity for normal—possibly even superior—thoughts and cognition, but never being able to communicate to the outer world, even to your parents.

And then imagine being considered cognitively impaired—what used to be referred to as ‘retarded’—and forever treated like a small, highly unruly child because even the most loving caretakers do not know about the person trapped inside. 

That is the sorry fate of many nonspeaking autistic children, young people and adults, as father-son duo J.B. and Jamie Handley lay bare in their extraordinary new book Underestimated (Skyhorse Publishing, 2021).

Although autism is discussed as a ‘spectrum’ disorder—everything from requiring full care to being a bit antisocial—as J.B. puts it, his 17-year-old son Jamie has the
‘real’ type:

 “Jamie doesn’t speak. When extremely frustrated, he can explode into a fit that ends in self-injury, the kind that’s sent him to the emergency room. 

“He has distinct mannerisms and will ‘stim’ in a way that clearly signals to the onlooker that Jamie has a unique disability. He has compulsions that can be hard for him to manage, like tearing leaves into very small pieces. 

“In school, it was clear to Jamie’s teachers that he was kind, sensitive and able to track and understand many of the things said and going on around him . . .  although how much he was tracking no one
really knew. 

“With the exception of a handful of words to get his basic needs met—phrases like ‘shower please,’ ‘go car,’ ‘help please’—Jamie has been a nonspeaker his whole life, despite many different communication methods we and his teachers tried to help get him speaking.”

Without Jamie being able to speak, teachers and specialists could not assess his cognitive ability, which meant that he was relegated to a ‘life skills’ class, spending his time learning how to do laundry and clean up his room—all the things he may be required to do as he approached an uncertain adulthood. 

It was the Handleys’ firm belief that their son had the type of autism “where he doesn’t even know
he has autism
 . . .  and what he doesn’t know or understand can’t hurt him.”

The Handleys’ life was turned upside down after their friend Honey told them she had been taking her autistic son Vince to a center called Inside Voice in Herndon, Virginia, which teaches Spelling to Communicate (S2C). Developed by Elizabeth Vosseller, S2C uses a simple letterboard for nonspeakers to spell out words. 

Honey texted a screenshot showing the perfect, even complex sentences Vince had written, using terms like “accolades,” “obstacle,” “learned point of view,” and “positive impact.”

These were not words he was taught to spell. These were words he already knew how to spell inside his head.

Stunned by this, the Handleys traveled to a S2C center a few months later, where Jamie was shown how to use a letterboard.  

Says Handley: “S2C makes a critical assumption about nonspeaking children: cognition is already there, as in fully and completely there. These kids are as smart or probably smarter than any ‘normal’ kid of the same age.”

Their challenge isn’t a cognitive one; it’s a physical one. The communication portion of their brain is not connected to the part involved in fine motor skills, which are necessary for speech. 

The main purpose of S2C is to help the user connect the brain’s communication area to its gross motor skills (which are intact), by learning to poke a pencil through a board with different letters.  

The first time Jamie met with an S2C teacher, he was handed a letterboard and immediately began answering questions, spelling words like “microwave,” “General Mills,” “Cracker Jacks,” and much more.  Before long he was spelling out words like “herbivore”—words he already knew how to spell.

Within a few months, Jamie was writing essays, even a letter to the President, which says: ‘The President needs to realize nonspeakers think, feel and learn just like everyone else.’ 

We rarely cry over a nonfiction book, but this book had us weeping.  Weeping for the parents who are reading The Cat in the Hat to teenagers or young adults who could be reading complex novels or studying calculus (as Jamie is now doing). Weeping for the children themselves, who have been locked into a prison of silence for decades.  

And also weeping for the many well-meaning health ‘professionals’ who discourage parents by saying that Spelling to Communicate doesn’t work, or that the children are being ‘cued’ by the reader.  

In December 2019, What Doctors Don’t Tell You  published a story about autism, which detailed the story of a mother who essentially healed her son of autism. 

Our magazine set off a Twitter storm and got banned by a chain of stores for suggesting that autistic children  required any help at all.  

In our cover story this month, Celeste McGovern covers this extraordinary teaching technique in detail and fleshes out the story of a number of young people  including Jamie, who turns out to be a highly talented, mature teenager who just happens to have some fine motor skill impairment. 

These are young people with a physical challenge, not a mental one. In the same way that we give children who can’t walk a wheelchair, it is our duty to help nonspeakers break free from their prison of silence.