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First Words

Thursday, October 18, 2012

Reporter: Michael Usher
Producer: Phil Goyen

Imagine not being able to communicate with your own child, never knowing what they're thinking or how they feel.

That's what life's like every day for the parents of severely autistic children. And it's just as distressing for the kids who have no way of expressing themselves and often lash out in frustration.

But finally, there's a way. Just as computer apps have revolutionised our lives, they're also changing how autistic children interact with their world.

Now they're truly connecting with their mums and dads for the first time.

And if you think that's remarkable, consider this: world first technology has made it possible for doctors to see how autism affects the brain, providing hope that we'll one day find a cure to this most mysterious of conditions.

STORY CONTACTS:

Augmentative and Alternative Communication (AAC) Apps:

iPad/iPhone
Spectronics
Proloquo2Go

Android
Speak for Yourself
Tobii Sono Flex

AAC apps to start on
Gabby Tabs
Simplified Touch

Educational Apps:

The iMums
Smart App for Kids
Apps for Home Schooling
Appy Store

For more information on the The Lizard Centre, visit www.lizardcentre.com.

Full transcript:

GRACE: Hi, Mum.

ANNE: Hi, Gracey, thank you. How was your day?

GRACE: Good.

ANNE: It was good. How was your day?

ANNE: How was my day? My day was great, thank you. Good girl.

STORY – MICHAEL USHER: Nine-year-old Grace Masi has a lot to say.

ANNE: Excellent spelling, well done.

MICHAEL USHER: But frustratingly for her and mum Anne, she’s had no voice - until now.

GRACE: I want rice cake, please.

ANNE: You can have rice cake, what beautiful asking. For her not only to be able to read, but spell, and then edit what she wants to say, is really powerful. Oh, you want to play with the phone.

MICHAEL USHER: So she’s just punched in phone. She’s spelt that.

ANNE: Yeah, she just spelt that.

MICHAEL USHER: Grace is among the 30 per cent of people with severe autism who cannot speak. But she, and thousands like her, have had their lives transformed by computer tablets and specially-designed applications or apps. How much of a difference has it been?

ANNE: Oh, it’s huge. We’re seen her come out, we’ve seen her character, we’ve seen her cheekiness. You know, she’s a real trickster, and it just – she seems to have blossomed.

MICHAEL USHER: And she’s communicating with you.

ANNE: Absolutely.

MICHAEL USHER: She’s telling you what she wants.

ANNE: Yeah, you mightn’t always want to hear what she’s telling us, but that’s the same as any child.

MICHAEL USHER: As you’ll see tonight, groundbreaking technology is not only changing the lives of children, but adults as well. And an incredible new brain scan shows us for the first time what autism actually looks like. And it could transform therapy. Wow. And all this - it’s a psychedelic look, isn’t it? But these are all the cables of brain.

WALTER: These are all the cables. And this gives us an ability to look at that part of the brain and begin to understand what the meaning is.

MICHAEL USHER: There was no such technology when Joshua Hood was diagnosed with autism as a boy. So, for 25 years, he’s struggled to communicate with his mum Nancy, immersed in his own private world.

NANCY: If I could not understand it, he would search the room and he’d be like trying to see if there was a picture of what he was talking about.

MICHAEL USHER: You were communicating through charades.

NANCY: Through charades, yeah, and you know, can you point to it. It was like he was speaking a foreign language, and I was like, I don’t speak that language.

MICHAEL USHER: What day is your birthday? But two years ago, a window into Joshua’s world was opened by an ipad.

JOSHUA: August 25th.

MICHAEL USHER: That’s your birthday. The computer tablet, with its downloaded apps, did what so many therapists had tried - it gave Josh a voice.

MICHAEL USHER: Can you put in a sentence how much you like this ipad?

JOSHUA: Josh loves 1000.

MICHAEL USHER: You love your ipad 1000 - that’s a lot. That’s a lot. What does it help you do?

JOSHUA: Music class. Education room, music class.

MICHAEL USHER: It helps you with school.

NANCY: It was almost like that button you hit on the computer screen, and all of a sudden it was just kind of like, wow, I can communicate with him, and now he can communicate back to me, and we each understand what the other one’s saying.

MICHAEL USHER: You’re actually finally having a conversation with your son.

NANCY: I am. I am, yeah.

MICHAEL USHER: But the evidence is more than anecdotal or wishful thinking by parents and teachers. World-first research at this school in Toronto Canada is providing hard evidence that apps and ipads can unlock the hidden thinking of children with autism. The study has taken two years, and its success is encouraging to say the least.

RHONDA: It’s a massive breakthrough, because for the first time, these children can control their environment to an extent that you know, they never have been able to before.

MICHAEL USHER: Professor Rhonda McEwen from Toronto University has spent the past two years working with teachers and students here, carefully studying just how, and why, apps can be so useful for kids with autism. What is it about this device that breaks down that barriers, and lets these children communicate for the first time?

RHONDA: My research is showing that it seems to be the multi-sensory aspect of it, cause and effect that’s so immediate. I can use my finger to touch something and immediately there’s an effect.

MICHAEL USHER: Take a look at just how immediate it is, as young Jennifer is asked to identify numbers on the sheet of paper.

STACIE: Where’s number 1? Where’s number 1?

MICHAEL USHER: She’s distracted - can’t concentrate.

STACIE: Jennifer, looking.

MICHAEL USHER: Then, with the ipad, an incredible difference.

STACIE: Good looking, Jennifer.

MICHAEL USHER: Now Jennifer is holding her attention. So too with Wallace. His frustration with this wooden puzzle is palpable. But bring in the ipad and he solves the puzzle time and time again.

STACIE: Alright! You did it! It’s shocking. It’s jaw open, no words can explain, when you see someone do something that you didn’t think they could do.

MICHAEL USHER: Their teacher here at the The Beverly School is Stacie Carroll. What’s the biggest change that you’ve noticed when the kids start using these ipads?

STACIE: The biggest change is level of student engagement - how long I can hold their attention in a given activity. When you see a child who has a lot of behaviours and is non-verbal sit down at a tablet and correctly identify 20 nouns that you didn’t think that they knew, it reminds you to never, never make an assumption of what a person knows or what a person can do.

JASPER: I want pizza.

MICHAEL USHER: Have you been able to measure how much more focused and engaged these children are using the apps?

STACIE: After a month and a half, all of a sudden we had children who were attending for six seconds move to 20 seconds, and then to almost 40 seconds, and so it was a very fast exponential shift.

MICHAEL USHER: The ipads may not work for everyone, but they are changing lives in the most unexpected ways. Amanda Williams’ son Nathan was one of the children involved in the study.

AMANDA: What happened? Did you turn it off?

MICHAEL USHER: Watch as he matches vegetables, showing thought planning, and motor skills - something he couldn’t clearly demonstrate until now.

STACIE: That is huge. That’s a skill that would normally take a long time to try and teach a child with autism to do. It’s phenomenal, it’s phenomenal.

MICHAEL USHER: But what’s even more phenomenal is that since using the ipad, Nathan’s often erratic behavior - so typical of someone with autism - has decreased dramatically.

STACIE: The biggest thing is just in his demeanor. It’s made him much calmer. The tablet has really helped to calm him, and make him feel more secure and more confident, and that’s because it’s his. It’s his to control.

MICHAEL USHER: While apps are transforming the way people live with autism, new technology is revolutionizing our medical understanding of the condition. The University of Pittsburgh’s Dr Walter Schneider is using a computer program, developed primarily to help people with traumatic brain injury, to work out why so many severely autistic people can’t speak.

WALTER: So this is all the cables of the brain, we can go into and segment a particular cable.

MICHAEL USHER: These psychedelic pictures represent the intricate wires in a brain. And for the very first time, we can actually see what autism looks like. On the left is someone with autism, on the right, someone without. Look at that. Wow. It has a whole lot more of these fibers and cables going on.

WALTER: Right.

MICHAEL USHER: These particular fibers make it possible see something and then say what it is. But in this brain of a woman with autism, that connection between seeing and saying is a jumbled, wiry mess. The message gets lost in the tangle. Do you know where all of these extra fibers in her brain are going?

WALTER: We do know where they’re going in the sense of which piece of the brain. We don’t yet know enough about the brain to actually know what each of those pieces are.

MICHAEL USHER: The hope is, now that we can see autism, we will one day be able to repair it - by focusing on the damaged part of the brain and rewiring it through therapy.

WALTER: Autism is an extremely difficult situation for the parents. Many of them will go through decades of misdiagnosis. If we can get a biological marker saying your child has this subset of problems in the wiring, we have a much better handle on trying to do interventions, to give them some ability to communicate, and have a more normal developmental sequence.

NANCY: What would you like, Josh?

JOSHUA: I want a drink of Coke, in a can.

MICHAEL USHER: Back in Boston, Nancy and her younger son Jimmy would love to actually see which part of Joshua’s brain is affected. But for now, just ordering his lunch via the ipad is a breakthrough - unimaginable only a few years ago.

JOSHUA: I want fish macaroni.

NANCY: I never thought that anything was ever going to come along that you’d be able to get to communicate with him, that he would be able to talk to you and carry on a conversation. It was just -

MICHAEL USHER: You never thought that was going to happen?

NANCY: No.

MICHAEL USHER: Have you got any questions for me? I’ve been asking you all the questions, do you want to ask me a question?

JOSHUA: Cool guy.

MICHAEL USHER: Me? I’m a cool guy? Man, Joshua, you are the best, that’s the best thing that’s ever been said to me. Thank you very, very much. You know what, I think you’re a cool guy too. For so long, the world of autism has been a total mystery. Now, many questions are being answered, by the very people who have been locked in for so long. And for Anne Masi, and her daughter Grace, they can now explore life together in a whole new way.

ANNE: I’m proud of her, you know. Because her determination, and what she puts into each day, is massive, so for me it’s a blessing.

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