The release of the new Autism & Beyond app gives parents the ability to prescreen their young children for autism spectrum disorder — without the assistance of a medical professional.
Given that parents are inherently biased when it comes to their own children, one could certainly ask: Is it a good idea to give parents this kind of diagnostic power?
Until now, parents who were concerned about their child’s development had few options.
They relied on the Modified Checklist of Autism in Toddlers (M-CHAT).
Under this system, parents would answer questions on the checklist to determine whether their child may be on the autism spectrum and if they should seek medical support.
Parents could also go directly to their medical professional with their concerns — if they had access and the resources to cover the screening costs.
Many children wait months and even years until they’re adequately assessed.
And even then, access and resources don’t always lead to a diagnosis because medical experts can have difficulty identifying whether a child is on the spectrum.
This means many concerned parents end up seeing several medical professionals before receiving a diagnosis for their child. This delay in diagnosis hinders a child’s ability to get the help they need to keep developing.
While children can be diagnosed as early as 18 months, the average age is 4 to 6 years old.
And early detection has been deemed crucial.
Dr. Helen L. Egger, chair of the Department of Child and Adolescent Psychiatry at Hassenfeld Children's Hospital at NYU Langone and lead author of the Autism & Beyond study, told Healthline: “By missing children and not identifying them, and not getting them services, we are really [doing them a] disservice and impacting a child’s development across the lifespan.”
The idea behind the new app
Closing this gap was the impetus behind the Autism & Beyond research and succeeding app.
The Autism & Beyond app was developed by interdisciplinary experts in an attempt to give power back to concerned parents so detection of autism could occur earlier.
“We started this partnership in seeing that one of the ways we could really be transformative in reaching more families and children is if we could apply this approach of doing automatic coding of observational behavior to different childhood areas, and in this case, it was autism,” Egger said.
Egger also emphasized that the team wasn’t trying to replace the clinical setting or a doctor’s diagnosis.
“It’s more, we’re going to use innovative ways to understand your child’s emotions, behavior, and development and then give you individualized, guided advice about where your kid is compared to other kids,” she said.
How the app works
The app is backed by the Duke Institute for Health Innovation and powered by Apple ResearchKit.
Parents of children under 6 years old who download the free app are taken to an e-Consent page.
After providing adequate consent, parents are instructed to show their child four different short video clips.
These 30-second clips are designed to elicit measurable behaviors and detect a child’s emotional response to certain stimuli, such as seeing bubbles or bunnies, or listening to women singing classic nursery rhymes like “Itsy Bitsy Spider” or “Twinkle, Twinkle Little Star.”
The app utilizes a front-facing camera to analyze the child’s emotional and behavioral responses through their facial expressions and micro-reactions.
Parents are also privy to seeing the video for themselves, which Egger feels is one of the most important aspects of the work.
“I wanted people to see what they were uploading,” she said.
Egger states that by seeing the responses, parents are better able to express empathy and understanding toward their child’s behaviors.
Upon analysis, the app will recommend next steps for parents and, if necessary, provide resources for further screening options and familial support.
The data is protected behind a firewall and it’s not in some company’s hands. The findings have the same protection as any medical data.
Prescreening in parents’ palms
Parents are typically the first people to detect any noticeable differences in their child’s development.
That being said, there are certain concerns about whether or not a parent should be placed in a position to diagnose their own child.
After all, parents are inevitably acting from a place of bias. Some parents are in denial about their child’s development. Others are quick to say autism must be causing behavioral issues that may or may not be related.
Egger emphasized that the most important part is getting parents access to sound, evidence-based knowledge.
She also confirmed that the app isn’t a diagnostic tool. Instead, it’s a prescreening, purposed to empower parents.
“I’m interested in getting parents direct access to evidence-based knowledge about their kid and not just have it mediated by ‘if your doctor happens to know about it’… I don’t personally think that we can completely automate the diagnosis process of these challenges in children. I think they serve as ways to screen. And say, ‘Oh, here’s a red flag,’” Egger said.
The app enables parents to better assess the situations they’re living with and make better-informed choices about how to proceed in parenting.
“It’s about you as a parent. You should have a way to get access to this knowledge. You can share it with your provider, you can use it to advocate for your child, you can use it to find resources. To me, that’s the kind of revolutionary thing behind it,” Egger said.
Can an app empower parents?
The Autism & Beyond app is the first of its kind as a marker in a new way of using digital technology.
However, it’s too early to treat the app as an end-all be-all diagnostic tool.
Renita Paranjape, senior director of programs and services at the Geneva Centre for Autism in Canada stated, “If the Autism and Beyond app is an effective tool to identify red flags for autism spectrum disorder (ASD), it may help families access resources earlier. It is too early to see how this will affect diagnoses and service delivery. Like all digital resources, families should ultimately talk to their doctor.”
Even though it’s still too early to see the full potential of this app, there are marked benefits.
The app increases access to evidence-based knowledge for parents and, arguably, provides more accurate data because it’s collected in the child’s natural environment rather than a lab setting.
“We need to be able to understand children in their natural environment. When we bring children into clinics or labs, we get great information, but it’s just a slice — and it’s in a weird environment and maybe they’re having a bad day or maybe it’s scary... what we really want to capture is children in their real lives and families in their real lives,” said Egger.
The ability to download an app for free and conduct reliable research in your own home, without wait times, doctor’s fees, or traveling to receive a prescreening, means more families are able to take control of their child’s well-being and development.
The app also empowers parents with data they can share with medical professionals, meaning they can better advocate for their child.
Egger agreed that this is only the beginning.
The Autism & Beyond research has led to an expansion of ideas on how parents can use the “supercomputer in their pockets” to better assess and understand their child’s development.
“It’s really a partnership between parents and their children and us to figure out how we keep understanding children better,” she said.