Honoring World Autism Awareness Day: “What Should I Do?”

Just as the women at Carmel 6000 were completing their training, Esti Ganan reached out to Dubi Ofer about a new idea of hers. Esti has worked as a speech therapist 29 years and was involved in started a school for children with autism near Modi’in. Dubi is the father of twins with autism, both of whom are now full grown. The two met 20 years ago when Esti worked with Dubi’s children.

Esti and Dubi both have spent years learning about and working with autistic children. With all of their personal experience and research, the two are well-equipped to develop solutions for autistic children and their families.

They reached out to The Israeli Society for Autistic Children (ALUT) about an idea they had for an application, just as Carmel 6000 contacted ALUT, in the hopes of developing an app for autistic children. The stars aligned, and all of a sudden, the newly-formed team were meeting to discuss plans for the new app: What Should I Do? or Keday Li.

Esti discussed the problems facing autistic children, but she prefaced her discussion with a saying: “You’ve seen one autistic child, and you’ve seen…one autistic child.” No two cases of autism are alike. The spectrum is wide—every child develops and behaves differently, however, she explained, there are certainly some commonalities that autistic children share.

Many autistic children like to maintain control, so scheduling changes or new experiences—anything that might surprise a child or require their flexibility—can result in a breakdown. If the music teacher is sick and the school schedule changes, students might be derailed for the rest of the day. Or if a child needs to get a haircut for the first time in a while, they might react strongly and unpredictably to the new experience. Routine changes and new experiences can be nearly impossible for families with autistic children.

At her school, Esti noticed that if children are briefed before a routine-shift or a new experience, their coping skills are far more effective. She began sketching out books, explaining experiences that tended to be difficult for her students. For instance, she wrote one about baths: “When you are dirty, your mother will put you in the bathtub. You will feel wet. She will put soap on your body and shampoo in your hair. You may get shampoo in your eyes, and that might sting.” The book talked children through all of the possible options, so they felt that they could maintain control during an experience that would usually leave them in tears.

But there was a problem with this solution—the children were told what would happen to them, but they had no agency in the decision-making process. Esti realized the importance of each child’s involvement in their own decision-making process, when she was working with Tamar.

Esti made a book about a child playing. In it, she included two potential narratives—one where the protagonist (Tamar) doesn’t compromise and then starts yelling and crying and then has to apologize to her classmates. And one where the same Tamar communicates her needs and ends up happy. After reading the story, Tamar was really excited. She was able to understand both that she had choices and what the repercussions of those choices were; the dual narrative structure gave Tamar agency. It was hugely impactful for her.

So, with this experience in mind, Esti reached out to Dubi about potentially publishing a series of books—all with multiple narratives—about situations with which autistic children generally struggle. They both were excited about the idea, but the process of writing, illustrating, and publishing books seemed too slow, so Esti and Dubi decided they wanted to make an app. The product would be faster, more flexible, and more interactive as an app than it would be as a book.

18-year-olds Roni Ashkenazi and Ayelet Ganot were assigned to the task, their first big project at Carmel 6000. They’ve been working on it for the past five months. The app was challenging to develop because it wasn’t a linear story, but instead had splits in the narrative, with lots of possible paths. It took a lot of time and thought, in order to design a minimum hierarchy database that could include all of this information.

Another challenging component was the audio narration. They wanted the user to be able to personalize the story based on name and gender, so they ended up leaving breaks in the audio for the user to record their own information. This was no easy task; Roni and Ayelet had to time each audio file and catch all the relevant events in an asynchronous environment.

Roni and Ayelet went into the process knowing a little bit about autism, but learned a lot throughout the process. For instance, in an earlier draft, all of the eyes in all of the illustrated characters were angled directly forward. But after talking to a neurological expert, the illustrator switched the eyes to be angled more sidewise—direct eye contact is alarming and disconcerting to many autistic children. Similarly, they wanted to make sure there was no clutter in the rooms of the illustrations, because many of their future-users were averse to mess and clutter.

Roni shared an apt description of the coding process: “you spend 90% of your time on the last 10% of work.” But Roni and Ayelet worked together to figure out the kinks and actualize Esti and Dubi’s vision.

While the current version of the app has just one story that Esti and Dubi wrote, they’re hoping that the app will eventually include lots of stories, all based on the needs of their users. And, they’re hoping that the app will offer four or five recurring solutions, like asking for a specific change or requesting time alone. Eventually, Esti hopes that users will internalize these solutions and be able to apply them to new situations independently.

But for now, the next step is testing their product out. After five months of hard work, Esti, Dubi, Roni, and Ayelet are about to see their product in action. In a week, a room filled with potential-future-users will be trying the product and providing feedback. The team is all really excited to see children actually using their product—and they’re also ready to keep improving the product in reaction to the feedback.

About the Author
Sophie Friedman grew up in New York City with her three siblings. She’s a Junior at Bowdoin College in Maine where she studies English & Education, writes a food column for her school newspaper, and leads camping trips. She’s spending the semester at the Rothberg International School at Hebrew University, working at Carmel 6000, and writing about what’s going on there.
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