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 the person trapped inside.
That is the sorry fate of many non-speaking autistic children, young people and adults, as father-son duo, J.B. and Jamie Handley, lay bare in their extraordinary new book Underestimated.
Although autism is discussed as a ‘spectrum’ disorder – everything from requiring full care to being a bit anti-social, 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 non-speaker 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, and meant that he was relegated to a ‘life skills’ class, exclusively for autistic children. They spend their days learning how to do laundry, or clean up their rooms, or use a debit card – all the things they may be required to do as they approach adulthood.
As Handley says, it was his and his wife’s firm belief that their son had the type of autism ‘where he doesn’t even know he has autism. He’s oblivious and happy, not self-conscious. . . . . . and what he doesn’t know or understand can’t hurt him.’
And, says Handley now, ‘I couldn’t have been more wrong. I mean, wrong by a trillion miles wrong.’
The Handleys’ life gets turned upside down after JB gets a phone call from Honey, one of the parents the Handleys regularly communicate with who share information about any treatments shown to help their children with autism.
Honey’s boy Vince is about the same age as Jamie, and also has ‘real autism,’ including being a non-speaker.
For a few months, Honey has been taking Vince to a center called Inside Voice, in Herndon, Virginia, which teaches ‘Spelling to Communicate’ (S2C). Developed by Elizabeth Vosseller, S2C uses simple letterboard for non-speakers to spell out words.
She shows him a screenshot, where Vince, answering questions put to him on a variety of subjects, writes perfect, even complex sentences, with words like ‘accolades,’ ‘obstacle,’ ‘learned point of view,’ and ‘positive impact.’
These are not words he was just taught to spell. These were words he already knew how to spell inside his head.
The Handleys travel to a S2C center, where Jamie is 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 as ‘probably smarter’ than any ‘normal’ kid of the same age.’
The issue isn’t their cognitive ability; the issue is one of fine motor skills, which are very difficult for young people like Jamie to do.
The main purpose of the lessons is to connect the communication portion of the brain to gross motor skills, so that they can get their body to move the way their brain wants it to by poking a pencil through a board with different letters.
The first time Jamie has a meeting with an S2C teacher, he is handed a letterboard and begins answering questions, spelling words like ‘microwave,’ ‘General Mills,’ ‘Cracker Jacks,’ and much more.
As Vosseller says, Jamie is really super smart,’ but has ‘17 years of ideas trapped inside his head.’ ‘The brain is sending perfectly clear messages, the body can’t execute the message, that’s the gist of it.’
Within a few months, Jamie is writing a letter to the president, which says: ‘The president needs to realize nonspeakers think, feel and learn just like everyone else.’
I rarely cry over a non-fiction book, but this book had me 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 parents of children or young adults with autism told by the many well-meaning health ‘professionals’ who discourage parents by saying that ‘spelling to communicate’ doesn’t work, or the children are being ‘cued’ by the reader.
Or, who tell the desperate parents that there’s absolutely nothing that can be done for the child, but to accept their condition and consider that there is nothing to be ‘fixed’ with their ‘exceptional’ child.
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, and which we featured on that month’s cover.
For a while our magazine set off a Twitter storm and even got banned in a store for suggesting that the children even required any help at all.
It is my prayer that Underestimated revolutionizes the way we think about autism. It ends with a Q and A with Jamie, who turns out to be a highly talented, mature teenager who just happens to have some gross motor skill impairment.
These are young people with a physical challenge, not a mental challenge. In the same way that we give children who can’t walk a wheelchair, it is our duty to help non-speakers break free of their prison of silence.
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