Margaret Goodwin began to suspect that something was different about her son, Mac, when he was about a year old. She compared him to friends’ kids who were about the same age. Mac didn’t make a lot of eye contact with people. He babbled, but not with any recognizable words.


She chalked it up to ear infections and the need for tubes and thought he would come along with his language. Then at 18 months, an audiologist confirmed that Mac could hear fine.


Pediatricians told Goodwin to wait and see. One told her it was too early to tell if it was autism. Later, a different neurologist saw Mac and missed many of the signs that pointed to autism. It wasn’t until he was 4 1/2 that he was diagnosed.


Mac, who is now 28, missed some of the early interventions that could have made a difference.


“We did lose some time,” Goodwin says.


“It has been proven that early diagnosis of autism will enable you to have early intervention,” says Dr. Jacques Benun, a pediatrician with Austin Regional Clinic. He’s also the lead researcher at ARC in a new study that is testing an app to help doctors diagnose autism.


The brain has two huge periods of growth. From birth until age 5, it is either building neuroconnections or pruning them, and at adolescence, the frontal lobe is maturing. In kids 5 and younger with autism, the brain often prunes the neuroconnections that it needs because there’s too much sensory input to process. Adolescents with autism often develop anxiety instead of a more neurotypical growth pattern, says Dr. Sharief Taraman, the chief medical officer at Cognoa, the company that makes the app being tested.


Cognoa, a California-based company, is developing the app to improve access to diagnosis, which would help avoid kids with autism pruning too many neuroconnections, by diagnosing them earlier and giving them access to therapies sooner.


“The only way to really treat autism is to activate the proper pathway and redirect the improper pathway,” Taraman says. That’s done through different therapies.


The app is being studied across the country, including in ARC’s study.


The Cognoa app has parents answer a questionnaire and then upload two videos of their child doing everyday things. Their pediatrician also answers questions about that child. In the study, the answers and videos will be reviewed by two remote specialists as well as by the app. Then the patient is referred to an Austin specialist who will meet with the child and family to make the formal diagnosis.


The study is comparing the diagnosis that the app made with the diagnosis that remote specialists and an in-person specialist made to see if the app is accurate at diagnosing autism.


It’s a blind study, so participants won’t be told what the app said, just what the specialist said. The data will be kept, because the future hope is that the app will be able to distinguish subsets of autism as well give doctors and families a clearer picture of what treatments work for that subset.


“The challenge with autism is it’s not one thing, it’s many, many things,” Taraman says.


ARC is enrolling participants through January. Testing will be done this month through February, and then Cognoa will analyze the results to submit for FDA approval, they hope by March. Then the company will wait for approval, which usually takes about half a year.


To participate, patients must be from 18 months through 5 years old; their parents must understand English and have a smartphone. To enroll, parents or guardians can go to tx.cognoastudy.com.


This study is working on getting diagnoses earlier. With this study, typically parents are asked a series of questions at their child’s 18-month and 2-year-old well-checks. If their answers are abnormal, the pediatrician then will refer them to a specialist. The problem in Austin, and many other places in the country, is that there are not enough specialists who diagnose autism to match the demand of kids who need to be diagnosed.


Benun says diagnosis takes months to two years. Kids sit on waiting lists instead of starting therapy.


“It’s frustrating for me,” he says. “I can't do anything about it. It’s frustrating to parents.”


He’s had some parents go to Houston or San Antonio to find an available specialist when they can’t get into the ones in town at Dell Children’s Medical Center of Central Texas.


Diagnosis is crucial to beginning therapy. While it’s a state law for insurance to cover autism therapy through age 7, companies usually won’t cover therapy without an official autism diagnosis.


Cognoa’s hope is that the app will be as accurate as a specialist, possibly even moreso, because while parents’ and pediatrician’s answers are subjective, the videos wouldn’t be.


“Sometimes parents are in denial,” Taraman says.


Benun agrees. He’s had a dad answer questions in one way that would indicate autism in a child and a mom come back and say that the way the dad answered wasn’t true.


The diagnostic app is Cognoa’s first step. Cognoa is also developing an app that will offer therapy for socialization of behavior and language.