New app helps build daily routines for kids with autism spectrum disorder

A couple of years ago, Adam Gold, CHOC’s chief technology officer, started thinking about what kind of app could help parents of kids with autism – or kids with other cognitive challenges, for that matter.

Gold has a nephew who has autism spectrum disorder (ASD), and his wife, Lisa, is a special education teacher. 

Now, Gold’s creation, an app he calls uTine (a play off the word “routine”), is on the verge of being tested on patients at the Thompson Autism Center (TAC), with a pilot version set to be ready by July 2021.

“The idea was to develop an app for children with autism and other cognitive challenges that they could use to help them get into routines or complete daily tasks,” says Gold, who will detail the app at CHOC Innovation Day on June 25.

Adam Gold, chief technology officer at CHOC

Casey Clay, PhD, director of the Behavior Program at the TAC, will pilot the app with patients and their parents.  

“Kids on the autism disorder spectrum like predictability of events, and this app will provide them with visual reminders of their next activity or task,” Clay says.

“What’s interesting about this app,” he adds, “is there’s a rich literature base in the field of behavior analysis and a lot of research on the effects of picture activity schedules, or visual activity schedules to help kids follow a schedule or get through an activity.”

CHOC Innovation Day — “A celebration of innovation at CHOC — will be held Friday, June 25, from 1-3 p.m. The online session, held in honor of the late Dr. Nick Anas for his contributions to innovation and medical intelligence, is open to all CHOC physicians and associates.

The virtual event will feature remarks by CHOC CEO Kim Cripe and Dr. Anthony Chang and also will showcase groundbreaking artificial intelligence and virtual reality projects, innovation by nurses, and much more.

On May 20, Gold previewed the uTine app during Pediatric Innovation Start-up Demo Day, an online forum hosted by The Innovation Lab in Newport Beach.

Gold worked with the Innovation Lab, a for-profit organization owned by non-profit healthcare systems, in developing uTine.

“I’m excited about it for a couple of reasons,” says Suzy Engwall, national director at The Innovation Lab. “First, the incidence of autism continues to grow. Kids with autism grow up to be adults with autism, and many who are on the spectrum never learn some of the basic life skills they need to have in order to take care of themselves every day.

“Second, as those with ASD get older, they ‘age out’ of many services, and if they don’t have family members who can take care of them, they will often end up in institutions or other places that they really shouldn’t be in, instead of living on their own because they haven’t learned all of the necessary life skills to do so.

“It’s really important to start as young as we can to teach these life skills in a fun and memorable way. We’ve really got to help those of the autism spectrum become as self-sufficient as possible.”

Suzy is working on the uTine app along with Innovation Lab colleagues Matt Keller, client engagement executive; Ganesh Laxminarayan, executive director, Health IT; Hesham (Sam) Mahdawi, technical project manager; and Durai Ashok, senior solutions architect.

How the app works

The app, which helps kids complete routine tasks such as brushing their teeth, putting on their shoes, and eating lunch, is easy to use with a simple design starring several cartoon animals, including a dog, a cat and a porcupine.

A parent signs up and creates a profile for his or her child, including name, age and personal preferences.

The parent can then start creating “uTines” with step-by-step instructions on how to complete a task. 

Using their own phone or their parent’s phone, the child captures each attempted or completed task by snapping a picture. The parent receives a notification and reviews the picture. The parent then can reward the child for completing a task – such as 15 minutes of TV time, 10 minutes on YouTube, one hour of playing with the dog – whatever the child likes to do.

When they reward their child, a parent can click on a pre-written message to send, such as, “You’re on fire today!”

Gold says he’s working on creating a public library parents can use for very simple uTines so they don’t have to create them themselves.

A key feature of the app is that parents can invite members of the child’s care team into the experience – a doctor, a nurse, a teacher, a psychologist. They, in turn, can gain insights into how the child is doing and chat back on forth securely with the parent.

Gold says he hopes the app gains traction for children with any condition or kids in general who have a hard time establishing routines.

“This app builds on a rich body of evidence-based research, so it’s very likely to succeed,” adds Clay. “This is all about pushing evidence-based research further so we at CHOC can help parents who have kids with autism and other conditions.”

Register here for CHOC Innovation Day.

Learn more about the Thompson Autism Center at CHOC.

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CHOC pioneers medical home for children with autism

The nationwide prevalence of autism spectrum disorder (ASD) in children is one in 54. Finding the most appropriate care for children with ASD, as well as support and education for their families, can be a challenge — a challenge the Thompson Autism Center at CHOC seeks to make easier.

Thompson Autism Center: Filling the service gap

The Thompson Autism Center is committed to addressing autism defined core symptoms related to social interaction, repetitive behavior and communication via a medical home approach to reduce unmet healthcare needs.

“While our focus is on early diagnosis of ASDs between the ages of 1 and 6, we are also offering many services for the large percentage of children who have co-occurring medical and mental health disorders associated with autism,” said Dr. J. Thomas Megerian, pediatric neurologist and medical director of the Thompson Autism Center.

Dr. J. Thomas Megerian, pediatric neurologist and medical director of the Thompson Autism Center, examines a patient using a stethoscope
Dr. J. Thomas Megerian, pediatric neurologist and medical director of the Thompson Autism Center (left)

“The center is a place for families to come for most of the specialty care needs for their child. Our goal is to have all of the professionals who care for the child communicate with each other in creating a coordinated treatment plan all in one setting, answering questions that families have about their child’s diagnosis and helping to troubleshoot when they are not receiving needed services. We also have specialists who can partner with our families and their school programs to optimize intervention and educational programming and identify appropriate community resources specific to the needs of the child and their family.”

Medical home three-pronged approach

The multidisciplinary Assessment Program offers a comprehensive assessment with a psychologist-led full day evaluation with physicians, speech-language pathologists and occupational therapists as well as a brief confirmatory assessment that’s physician-led, aimed at reducing wait times when a diagnosis is clear.

The Behavior Program addresses refractory behavioral disabilities in a highly structured, safely managed setting to address children and adolescents presenting with agitation, self-injury or aggression. Evidence-based toilet training interventions are also addressed to support each child’s progression. The Behavior Program also offers consultation services for community behavioral therapy providers when a child’s progress stalls despite ongoing therapy.

The Co-Occurring Conditions Program facilitates multidisciplinary consultations, individual or group therapy, and targeting social skill groups to improve interpersonal relationships.

“We also provide transition services and specialists who work on plans for a child’s transition into adulthood,” Dr. Megerian said. “Our mission includes partnering with local organizations, including legal agencies and schools, to provide patients with integration paths into the community.”

Clinical research center of excellence

The Thompson Autism Center is committed to partnering with public and private institutions and government facilities to investigate innovative diagnostics and novel therapies for ASD. Research is ongoing to develop, study and implement behavioral treatments and programs.

“We’re providing a home for groundbreaking research and clinical trials. We’d like to be able to bring clinical trials to the community so that they have safe options for trying novel therapies,” Dr. Megerian said.

Our care and commitment to children has been recognized

CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2020-21 Best Children’s Hospitals rankings, and ranked in the neurology and neurosurgery specialty.

Best Children's Hospitals, U.S. News & World Report, Neurology & Neurosurgery, 2020-21

Learn how CHOC’s neuroscience expertise, coordinated care, innovative programs and specialized treatments preserve childhood for children in Orange County, Calif., and beyond.

Can children outgrow autism?

A study recently published in the Journal of Child Neurology suggests that children may outgrow autism. We spoke to Dr. J. Thomas Megerian, pediatric neurologist and clinical director of the Thompson Autism Center at CHOC, about what parents should know about these findings.

What can providers tell parents about the study’s findings?

Many parents ask me, “Will my child outgrow autism?” and I always tell them that what we hope for is that with services and growth, the child will improve so much that after as little as a few years, they no longer meet the criteria for Autism Spectrum Disorder (ASD). Outgrowing the label may mean they have learned to compensate or overcome some challenges like socialization or repetitive movements. They may have little features left of ASD, and what symptoms they do have, may cease to interfere with their development or daily lives. When they have progressed to the point where they have outgrown the label, any remaining traits may be so small that only a parent would notice, but a new person who has just met the child wouldn’t pick up on anything.

However, I advise my patients’ parents that if and when their child outgrows the label of autism, they may still have other co-occurring issues like anxiety, attention deficit hyperactivity disorder (ADHD) or learning disabilities that require ongoing care.

So yes, indeed this study should give parents hope surrounding a child’s ability to outgrow the autism label, despite their other potential ongoing issues.

In some instances, schools may suggest a decrease in services because a child has improved and outgrown the label of autism. That same child may still be struggling with organization or learning certain subjects. Parents may be in a position to say that just because their child has outgrown the autism label doesn’t mean they do not have a need for additional support.

What does life look like for a child previously diagnosed with autism who is no longer on the spectrum?

Learning disabilities, obsessive compulsive disorder, and attention deficit disorder are common among children with ASD. Rates of other disorders are common among children with autism, including: gastrointestinal disorders, ear infections, seizures and anxiety. They may clear up later in life or become better managed, but they don’t necessarily go away at the same time as their autism label.

Residual symptoms of these co-occurring diagnoses may last into adulthood. For example, a child may outgrow their ASD label but still have anxiety that can be managed by cognitive behavioral therapy.

Why is early detection and early intervention of autism so important?

Early detection and intervention help many kids outgrow the autism label in the future due to improvements with socialization and repetitive behavior. It’s important for people to remember that just because they have lost the autism label doesn’t mean they don’t have other diagnoses or disorders that may require ongoing treatment.

There’s no question that early intervention makes a big difference in helping kids with the potential to outgrow their ASD diagnoses achieve that milestone even sooner. The trajectory has changed for many of those kids.