Empowering parents with ASDetect

Empowering parents with ASDetect

The researchers over at Olga Tennison Autism Research Centre (OTARC) work towards improving the lives of people with autism and their families. We recently spoke to Professor Cheryl Dissanayake about how important early diagnosis of autism can be for children and their families. She told us:

One of the difficulties in autism is that it’s an absence of behaviours that we are looking for. If you’re looking at a presence of something then it’s much easier to detect… However, there are very early signs. We’re trying to diagnose before language is in place. Relying on language means diagnosis is too late. We’re trying to work with pre-verbal communicative behaviours.

In order to solve these problems, OTARC have recently released an app that intends to empower parents in the diagnosis of their children. The app draws upon ground breaking research by La Trobe’s Dr Josephine Barbaro, and it uses videos and health care advice to support worried parents and caretakers. As Dr Barbaro says, ‘ASDetect is an empowering tool for parents who may feel their children are developing differently than expected and are looking for answers.’

We caught up with Mr Wojciech Nadachowski, OTARC’s Chief Operating Officer, to discuss how the app works.

How did the launch go?

Really well. We’ve had about 4200 downloads in the Apple app store and about 1500 in Google Play – basically a 3:1 ratio since we launched. Parents can download the app from ASDetect.org today.

Can you tell me how the tech works?

The architecture of ASDetect is pretty sophisticated. There’s essentially 3 main components which are interconnected:

  1. The mobile apps, one on Apple and the other on Android
  2. The mobile cloud platform which enables users to register, add their children and take the assessments
  3. Customer Relationship Management at the back end, where all the data is eventually stored and with which we send out timely emails to support their journey.

So people sign up. Then they add profiles for their children – they can add multiple children into the database. So you’ve got people’s children connected to their profiles, then they can perform an assessment for each child.

So when you say you can make a profile for each child, if a parent has three kids and they want to make a profile for each child, what happens then?

They give us their child’s name, their date of birth and some very basic demographic information like whether they already have a sibling on the spectrum, because that’s really important, and whether they’re prepared for their data to be included in the research. And the other question is whether they have permission to carry out the assessment.

The way ASDetect works is that it’s based on a set of questions they have to answer, but also there are videos accompanying every question. Every video is narrated and every video shows a child that is typically developing and a child that’s on the autism spectrum.

The parent or caretaker will get an email that welcomes them when they sign up, and we’ll send them an email to remind them if they’ve got another assessment due. If there’s a high likelihood or low likelihood of autism we’ll give them an assessment summary, with accompanying notes for health care professionals, as well as give them some next steps.

So practically, that means they’re getting really high level health care through this app. Stuff they might not be able to access through their local medical centre. That’s pretty amazing. If a parent’s downloading the app because they’re worried, to be able to get that kind of personalised care…

There’s more still to come! There’s more to flesh out. But you’re right, that kind of support and care, we’re calling a support journey.

When the parent or caretaker get that email from us, it’s a detailed email. Depending on the assessment it will say things like ‘what your next steps are’, ‘you’ve got to go to a health care professional, you’ve got to go to a GP’ – you want to take this email with you, you want to show them the links to the research that all this is built on, so you don’t get dismissed like ‘This is from Dr Google.’

Part of this email is an area called ‘For Health Care Professionals’ – so they print out this email, they show it to a healthcare professional and the GP can read through what we’ve basically built.

We’re also suggesting that in case a doctor or GP is dismissive, we ask them to show one videos in the app that demonstrates a behaviour that is displayed by the child.

You’re empowering parents then – now they can go into their doctor and say ‘this video is very much like my child’.

Exactly. They can say; this app is asking if my child shares their attention with me and I’m going to show you a video of what a kid with autism does – that’s like my child. Or, they’ll look at what a typically developing kid does at 12 months and they might not be sure. The videos are different at 12 months, at 18 months and at 24 months. Parents can do multiple assessments. They can do an assessment at 12 months, at 18 months and 24 months.

They can keep checking? To put their fears to rest?

So let’s say someone gets a low likelihood at 12 months. They will still get reminders about an 18 month and 24 month assessment. Like I said – it’s a support journey.

Empowering parents or caregivers to get a child extra help has enormous potential to improve lives. With thanks to funds from the 2016 Google Impact Challenge, the ASDetect app is being translated to Spanish and Mandarin to reach even broader audiences. A Spanish prototype version is expected to be ready for testing in April 2018 and planning for the Mandarin version is underway.

Learn more about La Trobe’s autism research through our Olga Tennison Autism Research Centre, which celebrates its 10th anniversary in 2018.