My 52-year-old autistic brother, Bobby, and I had a conversation a few months ago. It went like this . . .
“Bobby, what are you thinking about?”
“White-cat-meow.” He is sitting in his favorite reclining chair, staring at his fingers intently. He says the words quickly, running them together as if they were all one word. I’m pleasantly surprised at how promptly he responds to my question. This is unusual.
“White cat meow?” I repeat, trying to draw him out. I speak loudly and enunciate each word carefully. If I’m lucky, and if Bobby is in the mood and able, he will repeat the phrase back to me.
A few moments pass, then Bobby, still gazing at his fingers, says in a flat voice lacking inflection: “White-cat-meow.”
My heart jumps. Success! Bobby wants to talk today! I’ve gotten the ball rolling on this conversation. Now it’s my job to keep it going.
“White cat M-E-O-W!” I take a different tack, this time emphasizing the cat sound. I stretch out the word, making it sound more like a lion’s roar than a cat’s mewing.
Bobby’s eyes narrow. He has contorted the fingers on his right hand so they twist at strange angles, with each finger stacking on top of the one next to it. It looks painful, but he doesn’t flinch. He uses his left hand to make careful adjustments to the fingers on his right hand. He is taking in my response. I hold my breath. Ten seconds pass. Then fifteen. Twenty.
“White cat MEOW!” He suddenly drops both hands, straightens his fingers, and looks me squarely in the eye.
I’m elated. Our conversation is officially more interesting than his fingers! We trade a half dozen more “white cat meows.” He seems to enjoy the back and forth of our “discussion” as much as I do.
I then decide it’s time to push the envelope a bit. I’m curious to see how much more language I can coax out of him before he shuts down again.
“Bobby, what else are you thinking about?”
He seems taken aback. He had expected another “white-cat-meow” and instead I threw him a curve ball and broke the repetitive pattern. He moves his lips but no sounds come out. He furrows his brow and shakes his head a few times. He seems about to give up when out of nowhere he says:
“Chad pickup truck.”
He has a startled look on his face. Kind of like, “Wow, did I really say that?! Did I really have a thought in my mind that I was able to form into words that came out in such a way that someone else actually understood me?” Slowly, his eyes widen and he begins to smile.
I get Bobby and I smile, too. This has the makings of a good conversation. I immediately say “Chad pickup truck” to begin the next volley in our game of language and connection making. The trick here will be to continue the exchange at a pace and rhythm that will keep him engaged and perhaps lead him to disclose other bits of language that provide insight into his thoughts and feelings.
Searching for meaning in Bobby’s phrases
As he delivers the next round of “Chad pickup truck,” I begin to realize why this phrase might be important to him. Chad was one of Bobby’s behavioral aides until he moved out of the area last year. He worked with Bobby ten to twelve hours per week, providing much-needed respite for Mom, who is Bobby’s primary caregiver. He drove a white pickup truck and took Bobby for outings every weekend. Chad was a recent college graduate who majored in psychology and had an interest in learning about autism. He was protective and kind to Bobby.
Of course, rather than repeating this phrase endlessly, what I really want to say to Bobby is, “Yes, Chad drives a pickup truck and he used to take you to lots of interesting places in town. The two of you had a great time together. What was your favorite place to go with Chad? Did you like going to the mall with him? What about the marsh? Did you enjoy walking around the marsh with him on sunny days? What kind of wildlife did you see? Egrets, falcons, geese? Why are you mentioning Chad right now? Do you miss him, do you wish he were here to take you someplace?”
As always, I have many pent-up questions I would like to ask my profoundly autistic brother. Still, I know if I pursue even a few of my questions I will break this spell of language we are under and Bobby will be overwhelmed and unable to respond. He will shut down and go back to the comfort of his own finger stacking, finger contorting world. From experience I know to proceed gently and patiently, not to rush him, to look for the subtle signs that he is ready to take the next leap in our exchange.
It’s not long before I begin to see that opportunity. There is an eagerness in Bobby’s eyes. He has maintained eye contact with me for a few minutes, something many autistic people find difficult to do. He is now sitting on the edge of his chair, leaning forward. If you were to take a snapshot of the two of us at this moment in time, you would assume you were looking at two people engaged in an animated two-way conversation, not two people repeating the same disjointed phrase.
I feel as if Bobby is daring me to go ahead and break the rhythm, to take our conversation to the next level. I feel adventurous.
I say slowly and deliberately, “Bobby, is there anything else you’re thinking about?”
He takes the bait immediately.
“Sammy Davis, Jr.!”
I repeat the name back to Bobby, using his same tone and inflection. This is one of Bobby’s long-time favorite names. Since we were kids, he has invoked the name of Sammy Davis, Jr., at seemingly random times out of context to anything. Years might pass between him mentioning Sammy, but when he does it seems to be a name that has dug a deep groove in his brain, giving him tremendous pleasure in repeating. He once penned his version of an homage to Sammy, writing a full page in his notebook of the popular entertainer’s name in block letters with exclamation points after each entry. He wrote nothing else on the page, no other words or phrases connecting the name to some event in his life, to some TV show or movie or musical performance he might have seen starring Sammy. Just a full page of Sammy Davis, Jr. in bright blue ink.
While I do not know why Bobby obsesses over certain names and phrases, I do know that “echolalia” and “palilalia” are behavioral characteristics common to some people with autism and Tourette Syndrome. According to the National Tourette Syndrome Association’s Glossary of Terms, echolalia is the “repetition of words or phrases said by others,” while palilalia is “repeatedly saying one’s own words or phrases.” For Bobby, this repetition of phrases also includes written phrases (such as repeatedly writing “Sammy Davis, Jr.” and other favorite words or sentence fragments).
As a child growing up with an autistic brother, I did not know the definitions of echolalia and palilalia. All I knew was that it seemed like a game Bobby was trying to play with me and I was happy enough to go along for the ride if it meant I could achieve some sort of communication with him. Since there would be days and sometimes weeks when Bobby would not say anything, a flow of language – even what seemed on the surface like repetitive gibberish phrases – was like a gift from the Gods.
So, I conceal my disappointment when Bobby insists on repeating “Sammy Davis, Jr.” Traditionally, this phrase is a conversation stopper for him. We volley the name back and forth a few times before he breaks out in laughter. He closes his eyes, leans back and chuckles merrily at a joke or memory that he is unable to share with me.
The fragile connection is broken. He gets up abruptly and walks away, still laughing. Later that afternoon, I hear him whispering “Sammy Davis, Jr., Sammy Davis, Jr., Sammy Davis, Jr.” It will be his new mantra for the next few days, a secret password that he shares with his bewildered family.
Progress in small steps
Driving home that day, I go over in my mind the phrase that started it all: “White cat meow.” Years ago my boyfriend, Marc, and I had a white cat with gorgeous blue eyes. His name was Vanilla and one time Bobby visited me and spent time petting him. Was this the cat he was referring to? Was he trying to ask me where Vanilla was? Should I have told him that Vanilla had cancer and went to kitty heaven many years ago? Or did he mean some other white cat he saw in the neighborhood? Or maybe a cat he saw on TV or in an ad in a magazine? Was he even really thinking about cats when he said it? Or was this the only phrase his impaired brain would allow him to say?
I have many more questions than answers when trying to decipher Bobby’s language. I’ve spent many an hour in contemplation of autism and the way it affects communication. There are days when I get frustrated and feel that I am deluding myself by reading too much into Bobby’s nonsense phrases. Then, later on, I feel guilty for deeming any of his attempts at language as “nonsense.”
What is truly impressive is that after 52 years Bobby has not given up and is still trying to communicate with us. In fact, with Mom’s coaching and the help of his behavioral aides, he has made great strides in learning simple phrases. Nouns seem to be easier for him to say (as opposed to verbs, which he has difficulty using). He can say the nouns for his favorite foods, which these days are “cashews,” and “egg rolls,” and the makes and models of his favorite cars. He can ask for a break from activities by saying, “Break, please.” He consistently uses one all-purpose question — “You have something for me?” — to request food or attention.
Having an autistic sibling has meant I’ve had to redefine for myself what I consider language. The intricacies of language are complex; this is something I’ve only just begun to delve into as I study what constitutes language, how we learn language as children, and how we establish the rules that govern our communication. Language certainly also has a social and cultural context. Language is about giving and receiving, the connections we make with one another by sharing a story, the relationships we forge and strengthen by expressing our ideas and feelings.
If one of language’s main purposes is about giving and receiving, then I guess I could say that Bobby gave me “white cat meow.” While I’m not exactly sure how to interpret “white cat meow,” I do consider it a gift and welcome it into my relationship with my brother along with “Chad pickup truck” , “Sammy Davis, Jr.” and a whole slew of other mysterious phrases he has shared with us over the decades.
I drive home content, happy that today we enjoyed a few minutes of connection and wondering what words, if any, Bobby will share with us tomorrow.