Jerry, a young man with autism, approached two women in the waiting area. He pressed a button on his augmentative communication device and said, “Good morning. It’s nice to meet you.”
Thanks to a Nova Chat 7 communication device, Jerry, 22 (note: he turns 23 on 1/22/14), has a voice for the first time and he’s proud that people can easily understand what he has to say now.
As a Speech-Language Pathologist, I work with children, adolescents and adults with a variety of communication deficits and who typically struggle to interact socially. I was initially inspired to pursue speech-language pathology by observing a family member with autism and the progress he made throughout his childhood. My mother, a nurse practitioner, also suggested that I enter this field while I was in my early years of college, as she works with many speech therapists in the hospital and understands my desire to work with and help people.
More than 3.5 million Americans cannot rely on their natural speech to meet their daily communication needs (Beukleman & Mirenda, 2005). Our goal here at the YAI Augmentative and Alternative Communication (AAC) Center is to provide as many of these individuals as possible with the means to communicate so they can interact with peers, family members, and staff. This also enables them to more fully participate in school, at home, and work, while helping them establish and maintain social relationships, and meet their own personal needs.
My colleague Rachel Bouvin, Supervisor of Rehabilitation Services at YAI’s Center for Specialty Therapy, clearly recalls the day when Jerry was trying to make himself understood.
He guided her to the supervisor’s office at our Kew Gardens Day program in Queens, N.Y. “He pointed to his mouth, as we tried to figure out what he was trying to say,” Bouvin said. “‘Are you hungry?’ After 20 minutes, we finally figured out that he had to go to the dentist. Jerry was so excited that we understood. He is extremely motivated to communicate.”
When I first met Jerry, he would often write a word down to convey if he wanted something or attempt to produce 1-2 word utterances, but that was clearly not a functional means of communication for him. He frequently perseverated on different topics. But we didn’t know the full extent of his literacy and his understanding of more complex language.
Jerry’s world, as well as ours at YAI’s AAC Center, all changed about a year ago during a speech and language evaluation in Kew Gardens.
During the evaluation, I asked him his favorite TV show. He just stared blankly at me. I wasn’t sure if he didn’t understand the question or simply couldn’t communicate his answer. He saw my iPad on a nearby table and he opened it up and typed in “Laverne and Shirley Show.” I knew at that moment that Jerry was capable of so much more than we had imagined, and I knew at that moment that he needed an augmentative communication system.
Jerry is one of many individuals who has been evaluated at the program, which began in the spring of 2012, in Queens and the Bronx. YAI is expanding the program to Long Island, with evaluations available in Mineola and Brentwood.
Evaluating and then training an individual with autism or another developmental disability to utilize a communication system is life-changing; not only for the person, but just as much for his or her family, peers, and staff.
Before Jerry or any individual receives his or her device, I send home an eight-page questionnaire for the family to fill out. This entails providing names of all family members, including close cousins, aunts and uncles, pictures of family members, names of pets, likes and dislikes, recent vacations and outings. I program this specific information into the device – so that the device is tailored to the individual.
In addition to conducting comprehensive evaluations for individuals of all ages at the AAC Center, we also provide therapy and train new users, their family members, caregivers, staff and educators on how to utilize devices or communications systems. We program devices which some individuals may already own, including iPads, PC tablets, speech applications, etc.
We focus on a person’s needs, wants and beyond. In Jerry’s case, he no longer has to wait to be asked, “What would you like for a snack?” and await choices or respond just to yes-no questions. Having received his own device in the fall, he now proudly initiates conversation and comments on a variety of topics throughout the day.
Within a day of receiving training on his Nova Chat device, Jerry was in his day program editing his communication system. I observed him photographing different staff members so that he could create a button for each person, enabling him to say good morning to a person by name, or to ask to speak or see a staff member.
He displays total ease with typing and accessing different keys and pages, something you might expect after a person has the device for a year. In fact, he often tells me about certain upcoming events of which I am not aware. For instance, during a previous session, he was able to tell me that a new movie was coming out in theaters, and proceeded to provide me with the exact date of its debut. He can now tell me which volunteer site he attended that day, what his job responsibilities were, and how the day went. Before the acquisition of his device, I would have to ask numerous yes/no questions about his day, and Jerry would only be able to respond to my questions in one word answers.
I’m working with Jerry to use more complex sentence structures. As I show him a new page or key, he will grab hold of my finger. It helps him with motor memory and perhaps allows him to focus on new information. Since obtaining the device, we can now focus more on social skills, like meeting a new person or participating in and maintaining a conversation, as he previously did not have a consistent, functional means of communication.
“He’s very enthused about his device and wants to let you know what’s inside of him,” said Petal Morris, Supervisor of YAI’s Kew Gardens Day Services. “He’s a new person.”
“He’s so much more independent with the device,” said Denise Rutherford-Gill, another Supervisor at the program. “Before he started using the device, he would charge into my office and I would have to stop what I was doing. Now he comes in, and if I’m on the phone, he waits. He’s saying a lot more than ‘Hello.’ Just by pausing, and recognizing that I’m busy, he’s saying, ‘I want to have a conversation with you.’”
Denise admits she never imagined that a communication device could help an individual develop social skills. “My focus has always been to help them to try and understand. But look at [Jerry]. It’s the real person – who has been trapped inside – coming out.”
I am constantly inspired by the individuals I work with at the AAC Center. Whether it’s an individual using his communication system to tell his mother that for the first time that he or she loves her, or an individual finally having the opportunity to express his dream to open his own business, the individuals here at the YAI AAC Center are using their newly acquired voices to express themselves in their own unique ways. With a voice, the individuals we support are now able to develop relationships and friendships, build their social skills, and in some cases, obtain employment. Their lives are changed forever. And through working with them, so is mine.
Maegan Meneses, MA, CCC-SLP, is a Speech Language Pathologist at the YAI Center for Specialty Therapy’s Augmentative and Alternative Communication Center. For more information about the Augmentative & Alternative Communication Center or other services, call YAI LINK at 212-273-6182.