Spell 2 Communicate

A new understanding of the autistic individual’s inner knowledge and ability to express language.

The drive to the childhood therapy center is only ten minutes, and I keep thinking about the “heads-up” my friend Elizabeth Zielinski gave me just before we departed. She wrote:

The one thing that out-of-towners say they notice most about the clinic is that when you are there in the waiting area, absolutely everyone will greet your son directly. He may not answer, but it won’t change the way they interact with him. No one will talk about him as if he isn’t there or isn’t part of the conversation. It’s an incredible level of acceptance for our kids that I treasure when I am there with my son.

One more thing…. There is nothing you or your son could do or say that hasn’t been done or said there before. It’s the only place other than at home where I feel as though my son is completely safe and respected, even during a full-on DEFCON-1 meltdown. No one has to apologize for any behavior there, because everyone has shown it or watched it. That alone can take a lot of anxiety out of an experience for the students. And the parents.

If you’re an autism dad, you realize how beautiful these words are. Having a place, outside of your home, where your child is truly accepted for who they are and where you can let down your hypervigilant guard for a moment is truly a rare thing. Jeanne, the receptionist, doesn’t give me a second look. She’s entirely focused on welcoming Jamie. “Hello Jamie, it’s so great to meet you, welcome, please make yourself comfortable. Elizabeth will see you very soon.”

It feels great, really, to be in the background. I’m happy to play along with this charade that Jamie’s fully there, although deep down I can’t help but feel this is going to be another bust. It’s cold. It’s early. I’m exhausted from the cross-country trip and poor sleep last night. What am I doing here? Chasing a miracle? A poster on the wall catches my eye: Once trapped inside, my thoughts are finally free.

Ugh. I can’t read that again. The hope is too painful. I’m reminded of the introductory video I rewatched about Spelling to Communicate, starring Elizabeth Vosseller, on the plane ride. She explains:

Traditionally looking at it, we had a cognitive approach first, that it was an intellectual disability in people with autism. Then it sort of switched into, well, there’s a behavioral component to it, and there’s avoidance or lack of motivation or lack of caring to do well, so we have to appeal at a behavioral level. But, it’s not an issue of “I don’t understand.” It’s not an issue of “I don’t want to.” It’s an issue of “I can’t make my body do that.”

So, basically, she’s throwing 70 years of autism research out the window and saying every expert in the field is wrong. They have been saying the majority of people with autism are “mentally retarded.” But Elizabeth says autism isn’t really about cognition. It’s not something you solve behaviorally, which is what the most accepted form of autism therapy, Applied Behavior Analysis (ABA), is founded upon. These nonspeaking kids are cognitively completely intact; they just can’t make their body do what they want or need it to do. The disability is a motor planning and motor execution disability. Nothing else. Like the sign in the lobby says, they are “trapped inside.” It’s intriguing, to say the least. She explains more about the actual teaching method:

That’s why a lot of these guys are not given credit for being as smart as they are. Spelling to Communicate helps to make a connection between intent and action. All means of communication require motor skills. Speech is really complex, it’s one of the finest of the fine motors. The other complexity is the digits, and that’s what we use for communication. We start by taking communication out of speech, and we teach purposeful movement by using the whole arm, taking it out of fine-motor, putting it in gross-motor, to be able to point to letters on an increasingly complex series of letter boards to keyboards, and that’s how we give them a vehicle to express their thoughts and ideas. And the assumption is you can and do understand me, you can and do want to learn, and we go from that position.

Simple as that, right? I realize that “matter-of-fact” vibe I’ve picked up on starts with her. Sure, Elizabeth, sure, let’s just teach these kids how to point and, voilà, their inner genius will emerge. She does realize, right, that this would be the greatest thing that ever, ever happened to our family, right? To discover that Jamie has a voice just like Vince would be…oh shit, I’m letting hope seep in again, and Jeanne interrupts my thoughts when she strides in, looks right past me, and says, “Jamie, meet Elizabeth.”

Elizabeth, EV to all her friends, is immediately warm, and, as you already know, she’s focused on Jamie, greeting him warmly. She seems super calm, confident even. She greets me warmly too, and we’re immediately headed back to a simple teaching room, and as the three of us walk inside I see a single desk with two chairs, a video camera on a tripod, and a chair in the back, which I presume is mine. I’ve already texted my wife a picture of the “trapped inside” poster, and Lisa texts me back with the word Bawling. She’s hanging on my every text, and, unlike me, she’s let some hope seep in, and I know it’s killing her not to be here.

EV wastes no time. She sits down at the table, to Jamie’s right, and begins, having already turned on the videotape. “So, my friend, this is how it’s going to roll,” she says. I already feel like Jamie is warm and calm. “My name is Elizabeth,” she tells Jamie, and then spells it out calling out each letter in her name, “E-L-I-Z-A-B-E-T-H.” She continues, “and I’m so glad you came out to see me.” Then, she drops the first line that immediately causes me to weep.

“And I already know you’re smart, you don’t have anything to prove to me.” I’m a mess, and I realize that holding back my hope has only been a superficial exercise. Has anyone ever said that to Jamie before? I sure don’t think so. She keeps going. “I’m going to teach you how to do something new, totally new, that may feel a little bit weird at first.” EV picks up the first “letterboard.” Note that in S2C there are many types of letterboards, and Jamie is starting with the training wheels of letterboards, which are called “the three boards.” Basically, each of the three boards is a hard plastic stencil board with eight letters on it, arranged alphabetically, a little bit bigger than a normal-sized piece of paper.

Just as EV picks up the stencil, Jamie smiles and lets out a belly laugh. I know this as a sign that he is feeling real joy, and I’m wishing I could understand why. EV gets Jamie to sit up straight, put both feet on the ground, picks up the first letterboard with the letters A through H on it, puts a pencil in Jamie’s right hand, and says, “OK, we’re going to spell my name, so poke E to start.” Jamie pokes through the stenciled E without hesitation. EV guides him to pull his pencil back out, deftly switches boards to the middle board with the letters I through R on it, and then says “Poke L.” Jamie does so perfectly, and they do this over and over until her entire name has been spelled. The kid is getting it, and I’m damn proud! He’s smiling the whole time. After every poke of a letter, EV offers a super-enthusiastic “Good!”

“Okay, so here’s the thing. I know, as I already said, that you are really smart and have a really great brain, but that it’s hard for you to use your mouth in order to talk. It’s harder for you than it is for me. I just got lucky that it’s really easy for me to use my mouth. But, you also have a great brain and lots of good things to say, so I’m going to teach you a different way to communicate, and that’s going to be to spell using your arm instead of your mouth, because it’s easier to move your arm. Okay?”

I’m really struggling to internalize the gravity of what she’s saying, and I know this isn’t the first time EV has said these words. Is this really it? Is it that simple? You’re telling me these kids are all brilliant, they always have been, and they just can’t get the words out? These nonspeaking kids with autism, the ones relegated to the life skills classrooms and the adult scrap heap, are all a bunch of geniuses and she’s the first one to figure this out? How could this be possible? There’s a nuance here, one explained to me by Elizabeth Zielinski: fine-motor versus gross-motor. Most communication is fine-motor: Talking, writing, typing. For kids like Jamie, fine-motor is very, very hard. What EV is now asking Jamie to do is gross-motor. He’s mostly moving his shoulder. For whatever reason, this is much easier.

EV asks him a simple question. “Jamie, I said you had a great what?” With some prompting from EV, Jamie spells the word “brain.” This continues with the words “arm” and “spell,” two more perfect Jamie answers to EV’s simple questions.

“I like people to learn stuff while we practice this poking, so we’re going to learn about the history of popcorn,” EV declares. Thus begins Jamie’s first experience with an S2C lesson, which is a way for Jamie to learn something while practicing the physical act of poking a pencil through the stenciled letter. As she takes Jamie though popcorn’s history, she writes down and spells out loud a number of words like “popcorn” and “buttery” and “movies” and “cracker jacks.” After roughly a paragraph of the lesson, she stops to ask Jamie some questions.

“What are we talking about?” Jamie pokes the word “popcorn.” I’m confused. I didn’t even know he could spell. At all.

“OK. And, where do we eat buttery popcorn?” EV gets Jamie to sit up straighter in his chair, get both feet flat on the floor. He pokes the word “movies.” She’s still having to prompt Jamie quite a bit, but it sure feels like he’s tracking her and spelling the words. “And what do we eat at baseball games?” He spells “cracker jacks.” Wait. What? Because of Jamie’s diet, the kid has never seen a box of Cracker Jacks in his life. But he spells it without much hesitation.

“Nice, well done!” EV high-fives Jamie. This continues for more than half an hour. I notice Jamie is focused the whole time and is not having any issue remaining in his chair. Oftentimes, Jamie will need to get up and move or “stim” by shaking his arms or making loud noises when he’s asked to pay attention for a long time. I’m not used to seeing him like this.

EV tells Jamie she’s going to talk to his dad for a moment and turns to me. I’m nervous as hell. Is she going to let me down easy? Tell me my son is a really great kid but not a candidate for this method? All I’ve really known is heartbreak, so there’s no reason this should be any different.

“He, oh my gosh, crushed it.” I’m still confused. I’m not even sure what I saw. I need EV to clarify something for me: “When you were prompting him, what was he looking at?” I’m thinking he must have been looking at the words she wrote down. She tells me he couldn’t see the words, because she covers the sheet before she asks the questions. “He was giving you those answers without…?” I ask. “Correct,” she interrupts me, “He was spelling out of his head.” I’m really struggling. “He recollected all those words from the single time you said them?” I’m still in disbelief. “Yes,” EV responds. I’m in a little bit of shock.

All that comes out is, “Holy crap.” Inside, my brain is a mess. Euphoria, confusion, hope, and fear are battling it out. I look at Jamie. He’s beaming.

“Jamie is a really smart guy,” she says, “and our population of nonspeakers has been grossly underestimated. And, part of it is not being able to get your body to do it; it’s a breakdown of the connections between the brain and the body. The brain is sending perfectly clear messages, the body is not receiving it, the body can’t execute the message. That’s the gist of it.” I know some of this, because of the studying I’ve done in the past week, but seeing it for myself is something different.

EV starts sketching a brain map on a sheet of paper. I’m still processing what she’s just told me about Jamie. I’m struggling to concentrate. “When you’re listening to me, my sounds are going out of my mouth and into your ear and through your auditory system to this area called Wernicke’s area, which is the area for comprehension. So you’re understanding what I’m saying as I’m saying it, and you’re interpreting those speech sounds as they come through into meaningful words,” she says, explaining how you then start to form your own thoughts to respond to what you’ve heard.

“Broca’s area is the area for expressive language, and it is your thoughts and ideas and words. So as you’re listening to me, you’re understanding me because of Wernecke’s, but you are also having some thoughts here in Broca’s, but you’re not saying anything yet. Right now, these thoughts and ideas are trapped inside your head,” she says, and I think I know where she’s going, but it still hurts when she actually says it:

“And he has seventeen years of ideas trapped inside his head.” Ugh. Can you be euphoric and in deathly pain in the same moment? I think I am. She’s telling me he’s always been right here.

EV continues, “The ability to communicate, which means the sharing or exchange of ideas between two or more people, requires motor—every single form of it. So with our guys, who have a primary deficit in sensory motor, which is what their biggest issue is, I don’t care about the other diagnosis, the biggest issue that’s affecting their life is this motor planning. All communication requires motor. So, you can use your gross motor. You could push something away that you don’t want. You could kick me, you could push me away. You could punch me. Gross-motor communication our guys have down pretty well. But the most robust communication requires fine-motor, which is the digits or the articulators, which are all the moving parts of speech. So, in order to communicate, you have to have motor.” And, as EV talks, I find myself seeing Jamie in an entirely new light, right before my eyes. He’s sitting there, listening, taking everything in, and he looks extremely content, like EV is telling me something that he’s known all along.

“So up here is the motor strip, which is called the primary motor cortex. Right next to it, smack right next to it, is the sensory strip. About 75 percent of the space on the motor strip is dedicated to the digits and the articulators, because they’re the hardest to move. Right here, next to the motor strip, is an area called the supplemental motor cortex, and its responsible for voluntary or purposeful movement. When you have a problem with this area, it’s called apraxia, and everyone we see here has some form of apraxia. For our guys with apraxia, there is a breakdown between planning and execution. What we do is we take the movement out of the fine motor of the digits and into the gross motor of the arm. And, he took to it like a champ. Speech is 100 percent motor. Language is 100 percent cognitive. They are in two different areas of the brain. So, just because the motor and speech are affected does not mean the cognition or language is affected. There’s never any doubt in my mind that when someone walks into my room they can and will spell for me, that they can and do want to learn. Even seeing his engagement—oh my gosh, he’s a dream to work with, he’s so cooperative, so dialed in because I’m engaging both his body and his brain.” And now I’m listening intently, because it’s all making sense, and the years of frustration, I can actually feel them melting away, and the emotion in me, it’s crawling up my throat, I’m not sure if I want to burst into tears or jump for joy, and even though I think I know the answer, I just have to ask her, I need to hear it from her.

“So, I mean, do you have any doubt that he’s cognitively a 17-year-old?” I ask, trying to hang onto my composure. “Zero,” she responds. “Zero, like from my toenails to the top of my head, he’s all here.”

I don’t black out, but my vision really narrows as I hear this. I’m having some sort of emotional event. It doesn’t have a name, because I’ve never been here before. I think it might be years of suppressed hope, surging back into my body, all at once.

Excerpted from Underestimated: An Autism Miracle by J.B. and Jamison Handley.