Have you ever wondered how a nonverbal autistic person would respond if you looked at them squarely and told them to say a word?
I’ve always wondered about this. Would they actually try? Or would they seem not to comprehend your request and look away?
Well, I can certainly speak for “Payzley,” a nonverbal woman I’ve taken out into the community multiple times as a substitute community connector.
Since my diagnosis of autism almost four years ago, I’ve encountered a number of nonverbal autistic adults by attending various functions.
Some needed constant watch by a parent and didn’t seem capable of understanding even basic instructions.
To be fair, it’s important to note that sometimes nonverbal ASD comes with a severe intellectual disability (two completely different conditions that by chance co-occur).
In fact, a woman I met at an autism resource fair said that it was believed that her nonverbal teen daughter, who had to be watched every moment, had the cognitive function of a three-year-old.
Mom told me there was just absolutely no semblance of speech; only shrieks.
Payzley, the woman I’ve worked with, has been known to occasionally utter several simple words (never more than one at a time) including “Bye,” “Hey,” “Dad” and “No.”
Beyond this, there’s nothing; she is considered nonspeaking.
Recently we had a little downtime in that we were at the agency’s office waiting for her therapy appointment.
I decided to see what would happen if I point-blank asked her to say something, since she’s always been so good at following rules and verbal instructions.
I said, “Payzley, can you say your name?”
No wandering eyes; she made good focused eye contact, and her lips began moving: “P…p…payz.” That was all she could utter, and it was subtle, not like how you or I would say the first syllable.
I complimented her. I then said, “Say your last name.”
Out from her mouth was “K-k-k-k-k” in rapid succession. Her last name begins with K, and her effort was clear.
I then said, “Say swimming,” since she likes being in water. I heard a very faint “swih.”
I then asked her to say “water.” The sound out of her mouth was “wuh.”
This is a perfect example of a nonverbal autistic adult who can’t communicate with spoken language, who’s unable to use an AAC device to “talk” for her, and who’s unable to spontaneously print on paper what she wants or how she feels – but who darned knows what it means when someone asks her to try to speak.
That day I also had put paper before her and asked, “What would you like for lunch?”
She printed “l-u-n-c-h.” I then asked what kind of food she wanted. She printed “t-o-d f-o-o-d.”
This shows a disconnect somewhere in the motor planning process between the expressive language part of the brain and her fingers on a pen.
I’m certain Payzley knew exactly what I meant by “What would you like for lunch?”
But there was a bottleneck somewhere in the neurological sequence between intention to write “sandwich” or whatever she wanted and the physical output of this word via her scrawl-like printing.
Initially, I had asked her if she had brought a lunch with her (which she usually does).
Her answer was to take out her wallet, open it and pull out a $20 bill. This is communication!
What vexes me is that Payzley absolutely cannot count money. If I say, “Pull out $7,” she’ll understand what “pull out money” means, because she can follow these kinds of generic instructions.
But the ability to count out a specified amount just escapes her. She’ll randomly pull out bills.
I have no idea if she understands money but can’t physically execute the request (due to that bottleneck), or, if she simply doesn’t know how to count money.
Nonverbal autism is extremely fascinating, but it’s also not very well-understood by neuroscientists.
I’ve also briefly worked with a young man who’s nonverbal – absolutely no speech, nothing.
When I’ve spoken to him in a direct way, his facial expression and eyes are as though I’m not there.
But if I say, “Go to the car,” he’ll do that. He can put on a seatbelt and, in fact, automatically does this when getting into a vehicle (so does Payzley).
He has rudimentary skills with an AAC, and I even observed him – without any prompts from his mother – tap on it: A computer voice said, “I want a Hawaiian roll.”
And on the kitchen counter was, indeed, a bag of Hawaiian rolls.
Payzley does not take to an AAC device, as reported by her host home provider, but she can print her full name (the young man can’t) and a handful of words.
Though the man can use his AAC and is in the process of developing more skills with it, I wouldn’t be surprised if he’d be completely nonresponsive if I told him to speak his name or one of his favorite foods, pizza.
Nonverbal autism presents in many different permutations; not all people with nonverbal ASD are the same, just like not all people with low-support-needs autism are the same, just like not all neurotypical people are the same.
