I was so wrong about autism (thank God!)

I no longer believe nonspeakers with autism are suffering from cognitive challenges, this turns our whole understanding of autism upside-down

J.B. and Jamie Handley, Big Island, 2021

My 19-year-old son Jamie is sitting at the desk in our home office, directly in front of a computer screen where Dana Johnson, an occupational therapist based in Tampa, Florida, is guiding Jamie through a process she calls “self commands.” I’m sitting to Jamie’s right, laminated letterboard in hand, serving as Jamie’s “CRP,” an acronym familiar to the brave few undertaking a new communication method for nonspeakers with autism like Jamie known as Spelling 2 Communicate (“S2C”), which happens to be the subject of a new book co-written by me and Jamie that was released by Skyhorse Publishing in April 2021. To our great joy, the book has led to an overwhelming number of nonspeakers and their families giving S2C a try, and many new stories of children attaining fluency and being able to share with their families—for the first time in their lives—true thoughts and feelings. (By the way, CRP stands for “Communication and Regulation Partner.”)

On the desk in front of Jamie sit three objects: a roll of scotch tape, a watch, and a pair of sunglasses. They are evenly spaced out and the directive for Jamie is really simple: using the letterboard, tell your dad which object you will be picking up, and then do so. My job is also very clear: beyond repeating what Jamie spelled—and he spelled “I will pick up the watch”—say and do absolutely nothing. Just sit there. And, so I do. Jamie sits there. Dana sits there (on the screen). Minutes go by. Jamie appears no closer to completing his declared task. He tries to get me to tickle him. Finally, Dana adds the first verbal command of this exercise: “Jamie, eyes on it.” Jamie looks down, reaches out his hand, and picks up the watch. We all celebrate!

It’s fair by now if you’re feeling confused as hell, especially if you’re the parent of a nonspeaking child with autism. A year ago, I certainly would have been confused. The last year has been, beyond an insane whirlwind, the most joyous and unexpectedly miraculous time of my life, my wife’s life, and, more than anyone else’s life, Jamie’s.

In December 2019, I got an unexpected text from an autism mom based in Philadelphia—Honey Rinicella—with a remarkable story to tell about her son Vince, another non speaker with autism, slightly older than Jamie. It turn out that Vince, over the course of the few months, has emerged from his silent prison through the letterboard to reveal a highly intelligent, warm, caring, thoughtful soul. As Honey explained to me at the time, “We thought the height of his cognition was ‘I want juice’ and now this!” What is “this” exactly, I ask? Honey delivers the goods. A recent lesson Vince had with his S2C practitioner included the following back and forth, the all caps is Vince’s answer to the question posed by his S2C teacher, meticulously spelled out on a letterboard:

If you’re struggling to understand what’s going on, I get it. Reading Vince’s complex language for the first time 24 months ago triggered a serious case of cognitive dissonance in me, and I did my best to try and explain away what I was reading as some wonderful quirk about Vince that everyone had somehow missed, but this couldn’t possibly extrapolate to my son Jamie, could it?

Soon after Honey’s phone call, we embarked upon our own journey of teaching Jamie how to spell through a letterboard using the guidance of trained S2C professionals in Virginia, Southern California, and here in Portland. And, much to my joyous surprise, we started to see the same complex language emerge from Jamie that Honey had seen in Vince. I could tell you all about that journey, but that’s really the subject of our book, Underestimated: An Autism Miracle, so I hope you check it out! I won’t leave you totally in the dark, however, I will share some of Jamie’s words. But, before I do, I need to give you some very important context:

We didn't know Jamie could spell. We had no idea how his mind worked and whether he was capable of complex thought. We believed that as Jamie’s cognition grew, so would his words, which were very minimal. Yes, Jamie was kind and loving, but beyond that, we really, truly didn’t know. And, we were dead, dead wrong about Jamie, our own son.

Here’s just one screenshot from the book, of the many thousands of things Jamie has spelled on his board. It’s a back-and-forth between me and Jamie in an interview format.

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We’re still sitting there at the desk. Dana asks Jamie to do the same exercise again. This time Jamie says, “I will pick up the tape.” Dana asks, “How long do you want us to wait before prompting you?” Jamie answers on the board, “1 minute.” And so we do. The time goes by very slowly in the silence. Out of the blue, at about the 45 second mark, Jamie grabs the tape and picks It up. I let out a hoot, Dana celebrates through the screen, and Jamie smiles proudly—we’re making progress!

The world of S2C practitioners and all these nonspeakers cranking out beautiful words on the letterboards, they have turned my world, and my understanding of autism, on its head. This exercise has simply been another in a long line of revelations. What Dana’s exercise shows is something S2C practitioners have understood for years: nonspeakers have extreme challenges with initiation. As Jamie later explains to me, from the moment he declared his intent to pick up the tape, he was TRYING to pick it up, but he simply could not make his body do what he wanted to do. Had I used my voice to prompt him, Jamie would’ve picked up the tape immediately, because my voice command triggers a well established motor loop for Jamie. But, left to his own devices, it was much harder. Can you imagine how many ways this complexity has been misinterpreted by parents and autism experts alike?

S2C practitioners believe autism is not a disability of cognition, but rather one of the motor, or motor planning. They assert that all these nonspeakers are trapped inside a body that is very hard for them to move, because for some reason the motor cortex is not working the way it should. “My body is not my friend,” “Never read body language,” these are maxims held dear in S2C-land.

Even more revolutionary is something that few are ready to hear: Jamie and Vince are hardly alone. Most, if not all, nonspeakers with autism are every bit as bright and capable and struggling with the same motor planning issues. Could that possibly be true for the 3-5 million nonspeakers present here in the U.S. alone.? The implications are profound. Could we have missed autism that badly? I sure did.

A brief update, Christmas 2021:

In late summer, Jamie decided to drop out of his high school here in Portland, a place dedicated to working with children with autism, but a place unfortunately filled with many teachers who doubted what Jamie was doing with his letterboard. In fact, some teachers were unwilling to teach a class if Jamie was in there with his CRP and board. Unbelievable, I know, but very true and it’s a story playing out in schools all over the country.

Of course, Jamie picked up on all this negativity, and he wanted out. He decided to dedicate his time to becoming an independent typer. What does that mean? When starting S2C, a CRP is always holding the letterboard. For cynics, they point to this complex interaction between CRP and speller as “proof” that S2C is a mirage, and that the only spelling being done is being manipulated by the CRP. Anyone who has spent more than 5 minutes in a room watching a fluent speller spell knows this is false, but that’s the story haters like to tell.

Jamie decided he’d like to learn to spell on a computer keyboard sitting in a fixed position, meaning the keyboard isn’t touched by anyone. While every nonspeaker may not have the motor ability to achieve this independence, Jamie felt he did and wanted to try. Four months into this effort, we are watching Jamie spell complete sentences all by himself, shining an even stronger light on the destructiveness of the ignorant denialists (most of whom are certified BCBAs teaching the archaic and at times damaging system known as ABA).

How wonderfully ironic that it will be the nonspeakers themselves who will change the paradigm for how we see and teach those with nonspeaking autism.

J.B. Handley is an autism dad, a graduate of Stanford, the author of How to End the Autism Epidemic [the above essay is excerpted from this book], and the co-author of Underestimated: An Autism Miracle. He lives in Portland, Oregon with his wife and three children.