The other day on my personal Facebook page, I posted a link to an article about a young man who is graduating from high school with a 3.5 GPA. He was also selected to deliver the commencement speech. What’s so remarkable about him? This young man happens to be autistic-—and nonverbal. The posting inspired a dear friend Alexis to send me a private message asking what this all means. Though it took this young man a few more years than most to graduate (he’s 21), he’s clearly intelligent and articulate. He just lacks the ability to verbally communicate. So, how does all of this relate to Nate? How is Nate’s therapy team teaching Nate communication skills—verbal and otherwise? And do we know If Nate will ever be able to talk? That, my friends, is the million dollar question. Since Alex asked, I’m thinking others are wondering the same thing about Nate. So let’s tackle this question now.
Nate is nonverbal, not to be confused with mute. Nate makes sounds, babbling mostly (“DadDadDadDadDad” is a perennial favorite), but he does not speak words. That’s not to say that he can’t speak words, since he’s done so in the past. He says “Dad” consistently in an appropriate reference to his father and, on one glorious day, he said the sentence, “I Want Bubbles” three times to Miss Alison and me during therapy. Also, as reported in our May 4th entry, Nate has said “all done” and “hello” but, regrettably, I haven’t heard those phrases in a good month or so. These words and phrases are the exceptions to our normalcy. For the most part, Nate just makes sounds.
There is no guarantee that Nate will ever talk, though his therapy team seems hopeful. Babbling has significantly increased in recent weeks as has receptive ID, which means that Nate can identify something that you request. For example, if we ask Nate to show us where Curious George is in his book, he points to George. If we ask Nate to show us where Mr. Potato Head’s eyes are, he points to the plastic eyes. I’m told that these are all things that usually occur before speech arrives on the scene.
Nate has a speech therapist as part of his team but the speech work is limited since, well, Nate doesn’t talk. We work on imitating sounds; since Nate’s imitation skills are low (meaning he doesn’t naturally copy what he sees someone do), this is a difficult task to accomplish. So we throw in some imitation while carrying on with play-based therapy until such point that Miss Susan’s specialty can really be used. And, in the meantime, we work on the three alternate techniques of communication—PECS, pointing, and signing, so he has a way to effectively share his wants and needs.
The picture exchange communication system, or PECS, is going quite nicely. Nate recognizes the photos and associates them with a specific activity, and often exchanges them to request an activity during therapy. And it helped me work through a tricky situation with Nate: the playground. There’s a great new playground by our house and it’s lovely to have a place where Nate can run free and play on beautiful equipment. Nate has his favorites, namely the swings and the sandbox. On our first visit, we headed right to the swings. When it was time to move on to a new activity, Nate didn’t want to get out of the swing. A line was forming. It was no longer our turn. We had to get out of the swing. So I verbally suggested that we play in the sandbox. Nate didn’t understand what I was telling him and, as I physically removed him from the bucket swing, he went into full-blown meltdown mode, so much so that I was fearful other parents would question if I was trying to kidnap this cute kid.
Our second visit was for a therapy session. The same swing meltdown occurred. Miss Alison promptly said, “He needs a picture schedule.” So, I made one. I created photos of all the activities we do at the playground: swing, slide, sandbox, and xylophone. Then I made a picture of our car so Nate understood that’s where we were going when we were done. Armed with the picture schedule, I braved the playground by myself for a third visit. Lo and behold, the picture schedule worked! There was no fit at the end of swing time. Nate knew that we were going to the sandbox next and, after that, the slides. And, if he didn’t want to do that activity or was done, he could tell me by putting the picture in the “all done” slot. It was magical. We left the playground tear free and have been back many times since—but only with the schedule.
We’re also working with Nate to point to what he wants. If he wants a toy that’s up on a shelf, he’s learning that he point to the item so that an adult can see what he’s after. This, however, is nowhere near being a mastered skill. Nate’s still unsure what we’re trying to teach him and his low muscle tone makes it hard for his shoulders and chest to support such a reach. We’re starting the pointing lesson on low shelves and working on physical strength in occupational therapy in hopes that this can be his toolbox, too.
Finally, there’s signing. Again, because Nate’s got low imitation skills, it’s hard for him to pick up new signs. But he does know a few: eat, my turn, again, and jump (which, to Nate, means being thrown in the air). We are working on swing (so he can tell me that he wants to swing at the playground) and hello/goodbye (so he can be socially polite).
Chad and I are still hopeful that Nate will one day speak. Nate’s therapists have had friends that go from zero to sixty—no talking to speaking in full sentences—in one week’s time. If Nate follows his pattern of milestones—going from crawling to prolifically walking without practice, waking every hour to sleeping through the night in a 24 hour span— we think he might fall in this category. So we wait. We patiently wait. When (and if) Nate speaks, I imagine his voice will be like the sweet children’s choir on Thomas the Tank….without the British accent, of course.
At the same time, we have stopped holding our breath for Nate to talk. He had words when he was 12 months (book, ball, hello) but, as autism is wont to do, they all faded and haven’t come back. We kept thinking he’d talk at 15 months and 18 months and surely by two—because don’t all kids talk by two? But now we’re going on 2 years and a month and we’re spending that “is he going to talk today?” energy on helping Nate learn how to effectively communicate in other ways.
And why can’t Nate talk? Well, everyone’s still figuring this out. There was an awesome story on NPR the other day that really helped me better understand the situation. Autism makes your sensory skills hard to line up. If Nate’s in a room of people who are all talking, and you’re standing in front of him, talking, he’s looking at you and sees your lips move. However, his eyesight doesn’t sync up with his ears. Though he sees you talking, Nate hears every noise in the room instead of honing into the sound that’s coming from your lips. For speech, Nate has to mentally identify the item and then translate that into an audible identification. Those things don’t line up well, either, which explains why many autistic kids can prolifically write when armed with a keyboard even though they can’t speak a word.
So stay tuned. If that babble turns into a presidential speech, you’ll be the first to know about it.