I first met Norman in 1994, when I was hired to work for a human services agency in Portland, Maine that had awarded the contract to provide him with residential services. Along with a roommate, Norman was in the process of being transitioned out of the institution where both men had lived and been cared for their entire lives. It was a very important, confusing, and terrifying time for Norman.
Norman was born with profound mental retardation. He had been blind since early adulthood, when both his retinas were detached after hitting his head repeatedly against a wall during an extreme case of self-injurious behavior. He suffered from grand mal seizure disorder, and he was non-verbal. Norman’s only form of verbal expression was the repetitive uttering and yelling of specific words and phrases. This was due to a communication disorder called echolalia.
Echolalia is the repetition or echoing of verbal utterances made by another person. (Wikipedia) There are two forms of echolalia: immediate echolalia and delayed echolalia. In immediate echolalia, the echolalic person will repeat back words, phrases, or entire sentances that another person has just spoken aloud to them or in their presence. In cases of delayed echolalia, words, phrases, or much, much longer recitations are repeated at intervals, some time after they are first introduced to the echolalic person. Often, in cases of delayed echolalia, a person will repeat some of the same utterances for years, even over the duration of a lifetime. In some cases, it is thought to be simply compulsive, and in others, the delayed echolalia appears to have some communicative value.
In Norman’s case, the echolalia was delayed echolalia, and was considered to be compulsive, and not communicative. He had a very specific repetoire of utterances: “Norman,” “hey!” “shit,” “are you wet?” “truck!” “oh!” “awwwww,” and “Jesus Christ!” Most of these words and phrases were thought to be the repetitions of things that had been said to him or in his presence by institution staff and fellow residents over the years, and got “stuck” in the auditory portion his long-term memory.
Although the tone and volume of Norman’s echolalia, we well as the frequency of his repetitions, definitely altered with changes in his emotional state, it did appear that the original assessment that his delayed echolalia was compulsive and not communicative was correct.
When he first came to live in his new home, Norman was very frightened and confused. The environment he had lived in his entire life had been chaotic and unpredictable, but he had never lived in any other. The transition was a rocky one for him. In the first few months after moving into his new home, Norman yelled his words and phrases intermittently- sometimes angrily, sometimes despondently. He engaged in a lot of self-injurious behavior in the form of face slapping and head banging, while yelling for prolonged periods of time. Spitting toward the floor, which he did contemptuously, and not to hit anyone with, became a favorite form of critique for the members of his new staff.
Over time, however, Norman settled into his new home and began to relax in his surroundings. His roommate was also non-verbal, and was also unable to walk or move independently. For the first time in his forty-two years, Norman was not being hit unexpectedly or having his hair pulled by fellow residents in the institution. He was not having his ears screamed in or his food stolen from his plate. And a very interesting transformation began occurring with his echolalia.
I was sitting with Norman on the couch of his home one afternoon, and a large tractor-trailer passed by the house. Situated on a busy highway that transected the state of Maine, the house was frequently passed by large trucks.
“Truck!” shouted Norman, and he began to laugh. I stared at him in disbelief. “What the hell was that?” I demanded. “Did you just tell me that that was a truck?”
“Awwwww,” Norman replied. “Are you wet?”
From that moment forward, the truck game was a given. Norman loved to shout out “truck!” whenever a large and heavy vehicle passed by the house. If staff were present in the room to chide him for holding out on them for so long, his amusement was raucous. Soon, he began to use his echolalia to greater self-amusement. A tendency to switch up his words and phrases to give the people around him a hard time started to emerge, much to our amusement and to the amazement of some visiting former staff that had worked with him for years in the institution. “Are you wet,” and “shit,” became “are you shit?” “Are you Norman?” was another favorite, as was “Jesus shit,” and “are you Jesus shit?” He especially loved to pull out those last two for a couple of members of his new staff who found them to be slightly indelicate.
Over time, I became convinced that I was seeing some changes in Norman’s verbalizations. I began to keep a journal of his echolalia: of his utterances, his mood, corresponding activities, and what happened afterwards. Over a period of several weeks, patterns started to emerge that suggested that Norman was using his echolalia to communicate. As the primary member of his weekday staff, I shared the information with his night and weekend staff members and asked them to keep track of Norman’s echolalia as well.
Soon, we realized that we were hearing Norman repeat the word “awwwww” quite frequently before he became upset. Although he used that word in conjuncture with other words and phrases quite frequently, it soon became clear that when he simply said “awwwww” over and over again, something was weighing on him, and although he seemed find at that moment, he might soon be crying. A similar pattern began to emerge for his use of the word “hey” and angry outbursts or self-injurious behavior. Sometimes it might be several minutes or an hour later, but Norman was trying to let us know that something was making him angry.
Understanding the importance of these seemingly insignificant utterances was an incredible step in our interaction with Norman. Although he was still unable to communicate verbally in a way that would explain to those of us working with him what he was feeling, by helping us to identify that he was experiencing a problem allowed us to know that there was something we should be looking for. It also gave us the opportunity to tell him that we were aware that he was feeling badly about something, and that we were working on identifying if there was a way for us to help him.
So what do you do when you work with someone who is non-verbal, but who has just communicated that something was wrong? You do the best you can. We would start with his clothing, check his shoes, make sure nothing seemed misaligned or bunched up in a way that would be uncomfortable or painful. We would check him over for new bruises or injuries, rashes, any evidence that there might be physical pain. We would tune in more closely for any sign of cold or cough. If we could not find anything wrong, we would simply give Norman some acetaminophen. He would never be able to tell us if he had a headache, so we began to assume that he might if there was no other physical indicator of a problem. And sometimes, we would just sit with him, let him know that we weren’t sure what was wrong, but that we were sorry, and rub his shoulders or his head.
Once Norman began to use his echolalia to communicate, things seemed much happier and more comfortable for him. His incidence of self-injurious behavior decreased dramatically, and his joking utterances increased. He helped us to understand what he needed from us, and he learned to trust us in return.
