Can You Understand Me Now?
Review of "The Reason I Jump" and its importance for storytelling in nonverbal children.
On the first page of his book, Naoki Higashida explains how important it is that he and his mother found a way for him to communicate as a nonverbal child. Naoki’s mom built his alphabet grid so that Naoki could easily point to letters instead of writing them out one by one.
The grid helps Naoki
“anchor words, words that would otherwise flutter off as soon as [he] tried to speak them” (p. 20).
While in the beginning Naoki struggled to use the alphabet grid he figured out how to use it in a way that works best for him.
The general population’s knowledge of Autism is very limited and lacks any nuance. Autism Spectrum Disorder is often seen as more of a binary with super genius on one end and simpleton on the other. As a highly intelligent, nonverbal, child author, Naoki and his novel disrupt the genius-simpleton binary. This is important because our current understanding of how stories manifest themselves in people who are nonverbal is extremely limited.
Storytelling is integral to every culture. Because humans are social creatures, part of our development happens through storytelling. Young children are introduced to cultural norms from their parents telling them folk or personal stories. Later, when children reach adulthood they tell their own stories to their peers to assert their narrative identity and make sure they are still operating within cultural norms.
Experts in the field suggest that once children are around 1-2 they begin to use the linguistic structure provided by adults to help them organize their own memory representation. Language is not only used for organizing memories but also for expressing them. Children who engage in interactive storytelling such as pretend play, or sharing personal narratives not only have better narration skills but also episodic memory and recall. Storytelling facilitates an emerging awareness that memories can be experienced from multiple perspectives and of cultural values. With the advent of assistive technology it no longer feels basically impossible to connect with others in this same way.
Storytelling is just as integral to the development of nonverbal children as it is to verbal children. Their stories may manifest differently, perhaps in the form of images, but they are necessary nonetheless. Before the advent of paper, stories were kept through oral tradition only. Paper shifted how humans told, shared, and understood stories to a literary format; similarly, non-verbal stories matter regardless of if they are spoken. Allowing more nonverbal people to engage in cultural storytelling not only better integrates them into their own culture but helps their culture begin to include them.
How Would Nonverbal Storytelling Work?
We can learn a lot from Naoki and The Reason I Jump.
As the scientific community continues to explore autism, communication storytelling support tools available are rapidly expanding.
A low tech, reliable, “oldie but goodie” option for alternative communication are communication or picture boards like Naoki uses. Communication boards are cost effective, can be customized and made at home to suit individual needs.
The ultimate low tech, or “no tech” alternative communication style is sign language which is often used in conjunction with other communication tools. A benefit to sign language is it can be taught very early when one would normally teach their child to speak. For nonverbal children sign language opens the possibility of communication of basic needs such as hunger and fatigue at an early age which reduces the distress a child might feel due to being misunderstood.
High tech communication tools are able to vocalize speech for children who can type or choose pictures.
The Talker 24 provides easy, portable and affordable communication for the classroom or home. Taken from nationalautismresources.com An approach that includes a choice of tools is often very helpful as children are able to communicate using low tech options while learning how to use the more complicated technology. Or, depending on their energy level a nonverbal child can choose to use a high or low tech option.
Cost can definitely be a barrier to exploring higher tech options but many communication tools can be made at home and require little investment, like the alphabet grid Naoki’s mother made him. It is important to note that it might take longer for a child to begin to effectively use a new communication device than an allistic parent would expect - so don't give up! Finding the right communication device for your child may take some trial and error along with patience as they master a device that works for them but the pay off is immense.
For Naoki, finding nonverbal ways to communicate
“isn’t just about putting together sentences: it’s about getting across to other people what I want and need them to understand” (p. 26).
How Should I Engage in and Support Nonverbal Storytelling?
We can learn a lot from Naoki and The Reason I Jump.
It is too easy to assume nonverbal people have no understanding of their surroundings and therefore it is ok to ignore their wants and needs. Parents of nonverbal children should always assume their children can understand everything that is said around them; just because you can’t understand your kid, doesn't necessarily mean they can’t understand you.
Nobody enjoys being spoken down to, and even if nonverbal can’t hear what you are saying, nonverbal people definitely can feel it. Naoki does not want people to deliberately use difficult language just as they shouldn’t deliberately use childish language. How to walk this line is best explained in Naoki’s own words
“every single time I'm talked down to, I end up feeling utterly miserable - as if I'm being given a zero chance of a decent future. True compassion is about not bruising the other person’s self respect” (p. 11).
“We really badly want you to understand what's going on in our hearts and minds. And basically my feelings are the same as yours” (20).
Many nonverbal people, like Naoki, have just as rich of an inner world as verbal people; if their inner world is different from the rest of ours then it is all the more important to give them a voice and expand our understanding.
As Naoki notes, for nonverbal autistic people, the experience of trying to speak is like “remote controlling a faulty robot” (40). In other words, it’s not that the robot can’t move or nonverbal Autistics can’t speak, but the controls for movement, or speech, have faulty wiring and don’t respond to your commands in the desired way. Part of Naoki’s motivation in writing The Reason I Jump is to expand allistic’s understanding of autistic children because many children with autism don’t have the means to express themselves and their parents have no idea what they may be thinking.
Once Naoki discovered a method of communication that worked for him the benefits were twofold: he was now able to communicate his needs, and the people around him gained a better understanding of their loved one. Parents of children with autism read The Reason I Jump and gained a better understanding of what goes through their child’s mind. For some, the novel helped them see the potential for communication and social skills their autistic children have. While Naoki is not the first to write about his experience with autism, The Reason I Jump offers, for the first time, a window into a mind allistic people are rarely able to access. One can no longer simply dismiss a nonverbal autistic person as unintelligent just because they are nonverbal and autistic after reading Naoki’s novel.
If more people read The Reason I Jump and consequently expanded their understanding of the autistic experience, perhaps the world would be easier to navigate as an autistic person. Finding communication solutions wouldn’t require so much trial and error because there would be more awareness and research.
Many people currently have a simplistic understanding of autism that operates within a binary of super-geniuses or unintelligent, incapable people. The Reason I Jump breaks that binary by detailing the experience of an autistic boy who is expressive and intelligent but also struggles to integrate into an allistic society and has serious challenges as a result of his autism. His experience disrupts the expected binary which not only interests people but improves the allistic general impression of Autistic people.
Storytelling has the ability to break barriers and forge new connections across different situations. We need more stories from autistic people, not only because everyone deserves to have their story heard, but also to increase awareness and understanding in the hope of improving the lives of future autistic generations. At the end of the day
“please, whatever you do, don’t give up on us.” (p.14)
 | A guest post by
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Insightful. Meaningful points regarding the power of stories and story telling to create shared understanding.