Tongtong

Five-Year-Old Boy in China Finds the Power to Let AAC Be His Voice 

The past year has been a whirlwind for five-year-old Tongtong—a wonderful whirlwind. For the very first time, he discovered how to share his voice with the world. Initially, he did so using printouts of symbolic language on a communication board to discuss his needs, wants and feelings when he went to Spring Festival last winter to celebrate Chinese New Year with his parents. Then last fall/autumn, when Shanghai Qingcongquan Training Center for Children with Special Needs bought its first batch of augmentative and alternative communication (AAC) devices, Tongtong took one home. It happened to be a Tobii Dynavox Indi™ with Communicator language software. 

Tongtong’s mother Rao Li remembers her two-year-old son as a typical toddler in many ways though he presented some perplexing qualities early on.

“He couldn’t speak, wouldn’t look us in the eye and had some repetitive and stereotyped behaviors, such as spinning and walking on his toes. He had strong mood swings,” she said.

Rao Li also recalled times when communication appeared especially challenging for Tongtong before he reached the toddler stage.  When his parents couldn’t understand him or were slow in responding to his cries, for instance, Tongtong became so frustrated, that he would lie on the floor and cry until his face turned completely red.

“We thought it’s natural for boys to speak late, so we didn’t take it seriously.”

Sometimes he wept for more than an hour. “Once when we were walking across the street, he just collapsed out of the blue, crying and crying. There was nothing we could do to calm him down.” 

Eventually, staff at the community hospital near their home in China recommended that Rao Li take Tongtong to the Children’s Hospital of Fudan University in Shanghai. There they met with child autism expert Dr. Xu Xiu, who diagnosed Tongtong with a severe form of the condition. On Dr. Xu’s advice, Rao Li signed Tongtong up for programs for children with autism spectrum disorders. Due to limited resources and huge demand, children in Shanghai generally remain on a wait list for at least one year before admission to a program. 

After a restless two-year wait, Tongtong finally started attending the highly acclaimed Qingcongquan program in the fall of 2016 with vice principal Cheng Jie as his individual training teacher. Concerned that Tongtong fell short in his attempts to speak and there were some sounds he couldn’t produce at all, she focused on helping him surmount the challenges of being primarily non-verbal.

“We did some oral motor exercise with him. He could pronounce some words, but all in the same tone. Only people close to him could understand.”

It was Cheng Jie who created the printouts Tongtong brought with him when he traveled with his parents to Spring Festival earlier this year. The printouts provided vocabulary to use when he needed to go to the bathroom, wanted to eat, felt happy or even for random activities like exploring the family cell phone. While the low-tech AAC tools went a long way in putting Tongtong at ease on the trip, Rao Li prepared him well. Beginning about a month before the flight, she told him stories about traveling. Tongtong enjoyed listening to the social narratives, which helped make his new adventure less stressful and more fun.

“In general, Tongtong had quite a good time on that trip.” Cheng Jie said.

Cheng Jie advocated for Tongtong to raise his voice to new levels when Qingcongquan decided to purchase several AAC devices including the Indi with Communicator, which she considered virtually a perfect fit for him. The excitement surrounding Tongtong’s introduction to the technology had a flip side. Rao worried that having a device might keep her son from developing natural speech. But Cheng Jie soon convinced her to give it a try and Tongtong embarked on yet another stretch of his communication path.

For children with autism, communication can be a very complex experience, heightening their sensitivity. Behavioral expectations associated with human interaction may leave them feeling overwhelmed or insecure. It may be difficult to process what others are saying and the child’s own word retrieval abilities may be compromised.

Understanding and expressing abstract concepts can be problematic. Lacking a voice, children may rely on behaviors to communicate. Some might easily become aggressive or anxious. Others may find it easier to shut down, which Tongtong almost certainly can relate to. Before AAC came into his life, he refused to eat beans because he had never seen them before. He’d walk away from stray cats, frowning and afraid.

Sometimes there’s no way for communication partners to tell whether a child with autism understands them. As a mom, Rao Li found this most disheartening but the ache subsided as she saw her son make progress through a definite team effort. In sessions with Cheng Jie, Tongtong learned to respond when asked a question and to make associations. 

“We were having some snacks,” Cheng Jie said. “I asked him, ‘Do you like it?’ He touched ‘yes’ on the device.”

“Then I asked ‘which one would you like?’ He answered, ‘Big.’ So he actually is a very smart kid who understands the concept.” 

During a session on identifying tastes, Tongtong, his mom and teacher all learned something new. Cheng Jie prepared food in assorted flavors and let Tongtong choose what he wished to try.  Even Rao Li had no idea which flavor her son would pick. Given that most kids prefer sweet things, she and Cheng Jie figured Tongtong would, too.  So they were quite surprised when, after several alternate tastes of sour lime and samples of sweeter food, Tongtong turned to his AAC device and said he liked the sour taste better.  Rao Li and Cheng Jie were delighted to know what Tongtong was thinking. Moments like these showed his intelligence and desire to engage in the world around him. 

“He has a lot of feeling and can babble all the time, but it’s just that he couldn’t say it,” Cheng Jie said. “Now with AAC, he can tell us how he feels, that he is sad, he doesn’t want to do this, what he likes to eat...” 

One day during class when Tongtong showed signs of impatience and was not cooperative, his teacher used AAC to ask him if something was wrong. Using the device, Tongtong said he did not feel well, obviously very relieved that he could be understood.

“We had some bumps along the path, but now we’ve come to the right way,” Cheng Jie said. “AAC has given Tongtong a voice, and will help him grow even more.” 

Tongtong’s mom and dad, meanwhile, nurture his independence through everyday activities like taking the subway, shopping at the supermarket and visiting the zoo, as seen on his father’s frequent social media posts. Their hopes for Tongtong reflect those of parents everywhere. They want him to learn from experiences outside of school, conquer his fears and limitations, and blend in with everyone else

—all the while speaking in his own voice.  

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