Five teenagers spent the summer of COVID-19 developing a product that is helping children diagnosed with autism continue therapy sessions at home during the pandemic.
The high school students came together online as part of a international entrepreneurial project aimed at creating start-up companies. They have yet to meet in person. They design their products — autism therapy kits with instructional videos and a smart phone app — for individual families’ needs. The five entrepreneurs, who attend high schools in Nevada and California, are 15 to 17 years old.
They priced their product to be within the budget of all families who could use them, but are now giving them away as some clinic visits are cancelled over COVID-19 concerns and more parents have to provide home therapy to their children.
“We (initially) priced the kits at $15 each,” explained Priyanka Senthil of Reno, who is enrolled at both the Davidson Academy and the University of Nevada, Reno. “We did market research and combined the kit and the training videos with a (smart phone) app. Other therapy kits cost $40 to $85 each, so we wanted to make ours affordable.” A GoFundMe appeal raised about $1,000 in capital for their startup company, which covers the cost of raw materials.
“At the moment, we’re giving out free kits to families due to the COVID situation. We’re not really trying to make money; that’s not our main goal. We just want to help people.”
Cases of autism have rapidly increased
Families with children diagnosed with autism need a lot of help. Autism is a broad range of conditions characterized by patients who have difficulties with basic social skills, repetitive behaviors, speech and nonverbal communication. Its cause is unknown and experts say there is no “average” case.
Children with autism may seem to live in a secret world inside their heads. When they reach the age of 3 or 4, they may be wildly active or seem to be in a trance. They may exhibit behaviors such as hand-flapping, rocking, running into walls, walking on tiptoes, head-banging, screaming in public, repetitive behaviors and little eye contact. Symptoms often begin after the child’s first birthday, and children can lose speech and other skills they have previously acquired.
According to the CDC, using the most recent data available from 2016, autism affects an estimated 1 in 54 children in the U. S. , a 10 percent increase over 2014 estimates. Boys are four times more likely to be diagnosed with autism than girls. Nevada, according to the latest information available, has more than 8,500 children diagnosed with autism in the state’s school systems. All cases are unique. The saying among those who study the condition is: “If you’ve met one person with autism — you’ve met one person with autism.”
There is no cure, but over the past several decades a therapy called “applied behavioral analysis” (ABA) has had remarkable results in reinforcing and encouraging positive behaviors in children diagnosed with autism and helping them to engage more fully in everyday life experiences. The catch? The therapy is intensive, takes a lot of time each day and is very expensive when administered at clinics.
Therapy gets results, but is expensive
Insurance companies seldom cover the treatment. In Nevada, a state program provides some temporary financial assistance. In the long-term, though, most parents pay out of pocket. Even for those parents who can afford treatment, there are too few certified ABA providers to meet the need. Some families may wait months or years to get help. Some school districts offer therapy in their special education programs and other resources exist. But one-on-one intensive therapy is the gold standard, experts said.
“Hearing that diagnosis is devastating for a parent. What would I tell (other parents)? Early intervention will help. Your child could just be delayed. Some kids just talk later than others and they may not (be on the autistic spectrum). Early intervention, occupational and speech therapy will help. It definitely has benefits and it certainly isn’t going to hurt. Nevada Early Childhood Intervention Services are available free. Why not make the best use of it? It’s going to benefit your kid one way or the other.”— Krupa Shyam of Reno, whose son, 4, was diagnosed with autism at 18 months.
When a child does receive therapy in a clinical setting, it should continue at home, but that presents barriers to families who lack the tools and training to work with the children.
Enter Priyanka Senthil, who, as a little girl, played with a friend who she later learned had been diagnosed with autism. That sparked her interest in the condition. As a teen, she worked at the Northern Nevada R.A.V.E. Family Foundation, which provides respite care to families caring for young and adult children with special needs.
“We get children with autism, Down syndrome, a lot of conditions,” Senthil said. “The people that come to R.A.V.E. are usually foster families with children and they often don’t have the support to afford (ABA) therapy which can cost up to $60,000 per year.”
The clock is ticking for those families, she said. “The therapy is usually most effective when it’s started before the children are 4 years old,” Senthil said. “They need to get started and they need to continue it regularly. That’s hard to do, especially now, with COVID going on, when parents aren’t able to take the child to in-person therapy. Now it’s even more important to continue therapy at home.”
A summer project grew into a company
This summer, when Senthil was accepted into the LaunchX summer program, she listed “special needs children” as her interest area. LaunchX, which began in 2013, brings high school entrepreneurs from around the world to university campuses to start real companies. The process involves mentors, market research, multiple designs of prototypes and user testing, and marketing the resulting products.
This year, LaunchX was conducted online. Senthil virtually met four other high school students, all from California, who also are interested in helping children with special needs. They are: Isabella He from Fremont; Andrew Kim from Palo Alto; Anshul Gupta from Mission San Jose, and Arnav Gurudatt from Foster City. They put their heads together on Zoom and came up with the idea for home ABA therapy kits and support materials. Their work was based on research and advice from experts from UNR, Duke University, Stanford, Harvard, Brown and nonprofit organizations.
The end result was a company, AUesome, which makes the customizable at-home therapy kits. They realized the effort was more than an academic exercise. “It’s something that people needed,” Senthil said. “So after the program ended, we just kept our company going.” They have customers in three states so far.
Krupa Shyam of Reno, who uses the AUesome kits with her son, Mukund, 4, said the teens are on the right track.
“Yes, the kits are valuable, especially now with the COVID situation, when we don’t have much to do outside, and our ability to go to therapy (sessions) goes on and off,” she said. “If there’s a worry about an exposure at the therapy office, then appointments can be cancelled for two or three weeks. So it’s really good to have this at home.”
Her son was diagnosed as “probably” being on the autism spectrum when he was 18 months old. The family received help from Nevada’s Early Intervention Services, which provides free at-home therapy for children younger than 3. After that, school districts take over. Mukund gets help at school, as well as about three hours of behavioral therapy at home each week.
The team keeps improving their concept
“(AUsome) has done a good job with the kits,” Shyam said. “They have identified the target problems children with autism usually have with communication and fine motor skills, and they have chosen very good materials to go in the kits.” She said components such as the “clothespin activity, emotion flashcards, and shapes” included in her kits are very innovative and helpful “because they bring in a lot of communication with the kids. The (instructional) videos were great…
“It’s not a perfect fit, there’s room for improvement, but at the same time it’s a very good start,” she said. Shyam suggested that the materials in the kits be changed and updated every few months or quarterly depending on families’ individual needs. The AUesome team incorporated Shyam’s suggestions into their system by offering an online catalogue of activities and materials for the kits.
“Some children may be advanced in motor skills but may struggle with communication skills,” Senthil said. “With our catalog, families can pick activities from different categories and difficulty levels to best suit their needs. As suggested by (Shyam), we’ll be adding more activities to our catalog on an ongoing basis.”
In applied behavioral analysis, complex skills are broken down into simple elements which are taught individually and then combined together. The therapy begins with very simple tasks, such as looking at the tutor, clapping hands or staying seated. As the child progresses, the tasks become more complex. Simple objects, like clothespins, building blocks, string, and paper often are utilized for the exercises.
Each child diagnosed with autism has different needs
Some of the activities in their kits focus on helping children develop social and emotional intelligence by teaching them common facial expressions and emotional responses to everyday scenarios. Other activities focus on intricate movements like lacing, pinching, and building that can be applied to everyday tasks such as tying shoelaces, using pencils, and holding utensils, Senthil said.
“This team knows that no two children with special needs are exactly alike, and that is why we provide customized therapy kits. Parents can choose from a large catalog of activities to include in their kit, giving them the freedom to choose exercises that they think will best benefit their child and their personal needs. AUesome provides activities that target a wide range of difficulty levels to challenge children of different ages and functional levels. This means that the AUesome kits can progress right alongside the children.”– from AUesome’s company marketing materials.
The kits alone weren’t enough, she said. “In many cases the parents aren’t aware of how to continue the ABA training at home and keep reinforcing what they’ve already learned,” Senthil explained. “So we made the videos part of our effort to help parents guide the kids.”
Co-founder plans a career in brain science
They also added the interactive online app, which allows children to learn hands-on and digitally, she said. The exercises in the app can also be used offline, giving families the flexibility to continue therapy anywhere. The program also has a feature allowing parents to track a child’s progress over time.
Senthil, who plans to earn a degree in the field of neuroscience, said it feels good to be able to help parents move toward the goal of enabling their children to “live wonderful and rewarding lives.” Continuous, at-home therapy makes all the difference in the world when it comes to reaching that goal, she said.
“At-home therapy is a necessity for children with special needs, but currently, it’s a privilege open to those who can afford to spend more than $125 per session for an at-home therapist,” Senthil said. “AUesome aims to make therapy accessible to all and hopes that children with special needs can live the best lives they possibly can.”