Autism Pilot Program

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A new app-based pilot program may help rule out or diagnose autism. Southwest Autism Research and Resource Center Vice President and Director of Research Christopher Smith talks about how the new program will work.

José Cárdenas: Most experts agree early autism diagnosis gives children the best chance to overcome it. What if there was a way to rule out or diagnose autism within two to three weeks? A new program to help provide an answer, here to talk about is Christopher Smith, vice-president and director of research for the southwest autism research and resource center. Dr. Smith, thank you for joining us on "Horizonte." What's the problem right now? If anything, we hear that there is an increasing number of children who are diagnosed with autism, and the reason seems to be because people recognize the symptoms fairly early. So why do we need something else?

Christopher Smith: I don't know that I would say people recognize the symptoms fairly early. The average age for diagnosis in Arizona is somewhere around the able of 5. That's too late. That's not early intervention. We need something else now, because there are barriers to achieving early diagnosis for most families. There's long wait lists for practitioners that are able to diagnose autism, and the purpose of the app is to accelerate the process for diagnosis of autism.

José Cárdenas: We're talking about a situation where the parents have some reason to believe or think something is wrong.

Christopher Smith: Exactly. So either the parent is concerned themselves, and they can download this app and begin the process, or a pediatrician may recognize there's concerns with the parent and rather than -- With the child and rather than refer the parent to the conventional method where they might face long wait lists, sometimes up to a year for diagnosis, the pediatrician can refer the parent right to this process. And the parent could have a diagnosis back in their hands within two weeks. So from that point --

José Cárdenas: Tell us about NODA, what it stand for and what the app is all about.

Christopher Smith: It stand for the naturalistic observation diagnostic assessment. It's based on behaviors that occur in the child's natural environment, their home, when they're at home with their family. And what we're doing, what noda does is allow the parent the opportunity to capture the behaviors that raise their concerns in the first place. And so noda instructs the parent to collect videos in four different situations that occur in the home that are typically related to, or provide opportunities for the child to display typical social communicative behavior, or play-based behaviors. And noda will ask the parent to upload a 10-minute video in four different situations, and that gets uploaded to a web-based portal and a clinician will log on and review the child's developmental history that the parent uploads, and review these videos that the parent uploads, and they watch the videos for a specific behavioral example that are indicative after developmental delay, possibly related to autism.

José Cárdenas: So the analyst looks at this and makes a adjustment, and how is that -- Adjustment, and how is that communicated back to the parent?

Christopher Smith: There's another step. The system organization all of the behavioral evidence according to the standard diagnostic procedure, and the clinician reviews all of that information and actually makes the determination whether or not there's enough evidence to say that the -- There is a diagnosis of autism present, or that autism is present, or that it's a real concern. And I want to stress the point there's nothing magical about this app. It doesn't do anything that's entirely different, other than accelerate the process. The diagnosis is still based on developmental history of the child, specific behavioral examples, and clinical judgment. And those are the same three elements that are involved in any high-quality diagnosis for autism today.

José Cárdenas: But the difference is instead of waiting a year to get in to see the clinician, like within weeks of uploading the information, they've got to respond.

Christopher Smith: Exactly. And the parent can be sent on the right path. They'll get a report back from noda that will outline all of the clinicians' interpretation of the information they have, and identifying specific behavioral concerns, and then outlining the next steps they need to take to get involved in an early intensive behavioral intervention program, and it could potentially restore eight months to a year of that child's life that can be better spent on early intervention, providing that child with the opportunity to improve their functioning in a way that wouldn't be possible otherwise.

José Cárdenas: So how long has this been in the development phase and where are you in that process?

Christopher Smith: We started very early pilot work five years ago. And then through persistence with the national institute of mental health and a collaborators in the project, accompanied by the -- A company named behavioral imaging solutions, we got funded through a small business initiative research grant from the NiNH to develop the technology, to put this all into a workable product. And then for the past year we've been testing it on 50 families that have been referred, and we've been comparing the diagnosis that was determined through noda to the diagnosis that's determined through the standard -- The gold standard in-person diagnostic assessment. And our results so far show an 87.2% agreement with the in-person assessment. And that's a very strong statistic, and there's other analyses we're doing too. And we're nearing the end of having all of the information we need to do a real thorough analysis.

José Cárdenas: For that small percentage where there's a difference between in-person and the video, which way does it go? Does it show there's false positives, and you end up saying, no, this child isn't suffering from autism? Or the other way around?

Christopher Smith: It's more the other way around. It's a false negative, for some reason the parent -- The NODA clinician wasn't able to see the behaviors that are indicative of autism in that assessment, or the clinician needed more information. There's a varying reasons why that -- Reasons to explain that very small number of families.

José Cárdenas: So now you're going to expand the program. What will it be fully available to any parent?

Christopher Smith: In January 2015. Very early in January, parents will be able to go ahead and download the app from the app store, and they'll be able to set up an account. But until then, if any families are seeing this report right now, they can contact SARC and get the name and contact information on a waiting list. And as soon as the technology is ready for them to download, we'll send them a link and let them know what to do.

José Cárdenas: So if a parent gets a response that at least based on the video that was seen, no indications of autism, but they're still concerned, is it back to square one? Or will somebody see them more quickly than they would otherwise? We're almost out of time.

Christopher Smith: They're not necessarily back to square one. There will be clinical information in the report. In many cases the disagreements are not, we think this child is typical. The information that we're getting from NODA is that there are developmental concerns here, we're just not seeing enough to say it's diagnosis -- Diagnosable as autism. So that information will be relayed to parents. That's in a very small percentage of people in this initial trial.

José Cárdenas: Thank you so much for joining us on "Horizonte" to talk about this trial and best of luck with the full implementation.

Christopher Smith: Thank you very much.

José Cárdenas: That is our show for tonight. From all of us here at eight and "Horizonte," thanks for watching. I'm José Cárdenas. Have a good evening.

Funding for "Horizonte" is made possible by contributions by the friends of eight. Members of your Arizona PBS station.

Christopher Smith:Vice President and Director of Research, Southwest Autism Research and Resource Center;

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