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Chat: Anne Masi

Monday, October 22, 2012

Interviewer: 60 Minutes presents a live interview with Anne Masi.

Interviewer: Anne, welcome to our chat tonight.

Anne Masi: Hi everyone, thanks for joining my chat tonight, I hope I will be able to answer all your questions.

Interviewer: We'll get straight to the questions...

Pied asks: When did you find out that Grace had Autism?

Anne Masi: Grace was about 3 and a half years old.

Nick asks: is there particular apps that you use on the iPad ?

Anne Masi: There's a huge number of apps available for education purposes, so it depends what you want them for, if you want to teach, what you actually want to teach. There are a number of sites that review educational apps, so it is important to look at the quality of each one so you know that it will do what you want it to do.

Pied asks: How do you manage to look after an autistic child? What difference has the iPad made in your relationship with her?

Anne Masi: It's made a significant difference in that it has given Grace a voice and to a degree to spontaneity. It's really valuable for me to know how she feels and what her wants and needs are. We also use it a lot for teaching Grace cognitive and academic skills. So from that sense is it extremely valuable as well.

Pied asks: How did you cope with Grace's Autism before you got an iPad?

Anne Masi: I did a lot of research and a lot of reading, spoke to a lot of people who had some knowledge of autism. As soon as we knew Grace had an autism diagnoses, we began an intensive extension program using the ABA technique to teach her cognitive, academic, grow and fine motor and social skills, as well as how to communicate.

Nick asks: Is there any special setup required for the iPad to be used?

Anne Masi: The app Grace is using on the show is called "proloquo2go", that has a lot of flexibility in terms of the settings. And also there are settings on the iPad that make it more accessible for Grace.

chriswithers asks: Is there any info on the name of the apps that was shown tonight?

Anne Masi: Grace and the young man featured was using "proloquo2go", but there are a number of communication apps available. And there is a good website in Australia that summaries some of the features of these apps. We began using proloquo2go not long after it came out, so we've continued to use that particular communication app, but there are other good ones available.

carla28 asks: I have a son with Down Syndrome 22 yrs old. His speech is difficult to understand and he finds it quite frustrating. He has an iPad and I have heard of so many apps and not sure which one to buy. Can you advise please

Anne Masi: There are some good websites that summaries the features of communication apps, and we'll put a list of those up tomorrow.

kyall asks: Anne, how wonderful these apps are. I have a nephew with autism he will be 10 in January. He also has dysplasia and brain damage. Would you be able to tell me the name of the app that lets them talk please. I actually have tears in my eyes just at the thought of him being able to communicate

Anne Masi: Thank you for sharing. The app that we use is proloquo2go and when we started to use it we were teaching Grace to answer very simple basic questions using Yes and No. We have gradually built on that, it didn't happen over night. We laid a foundation and slowly built on it to develop her communication.

caringsister asks: Can people in Australia participate in trials?

Anne Masi: We'll be putting up a list tomorrow of various communication apps and also try and identify which apps might offer a brief trial period.

Rick asks: What a fantastic development in helping autistic children! Still, what do you think of the idea of going all the way- by which I mean, why not develop applications for autistic children using something like Microsoft's motion-sensing Kinect system. Imagine these children not just learning reading and communication skills, but advanced motor skills (something which they often lack) as well.

Anne Masi: I think that's a fabulous idea and to a small degree that's available in some of the xbox games. And it will be fabulous when we get to that point, but what's currently available for these children is a good start, and once they are motivated to communicate, it opens up a number of other doors for them.

grantwp123 asks: Hi Anne,Hope all is well. How do you feel the NDIS is progressing? Havent heard much from the shadow minister Joe Hockey on funding?

Anne Masi: I hope it continues to progress and I think it is important that all those involved continue to have a voice and help those making the decisions realise how important this is.

cathy asks: I am a kindergarten educator and I was very curious to find out how I can get these programs into operation in our education system

Anne Masi: There is a number of websites that review educational apps and we'll endeavour to put a list of those up tomorrow. So initially it is important to identify what the need is, then identify the app, and then do the research to make sure that the app is going to satisfy that need.

Noreen asks: If the apps work for autism would it work for a 4 year old with verbal dyspraxia?

Anne Masi: The communication apps may be a real motivator for a trial with dyspraxia and offer the potential to develop more complex communication abilities. But it is important to start with something with very basic communication, such as answering yes or no questions to help the user develop their confident and intent to communicate.

Michelle asks: how did you feel when you found out she had autism

Anne Masi: I felt lost and perhaps uncertain. But I very quickly started to identify what was available to help our daughter Grace and started an early intervention program using applied behaviour analyses (ABA) and once we started to focus on helping Grace, it became much easier to manage the diagnoses.

joanna.mcs asks: Hi Anne, I'm doing an assignment for school and have chosen the topic of autism and its effects on the family. I was hoping you could help me out with some information of how having a child with autism effects your family economically, emotionally and physically?

Anne Masi: Good for you for choosing autism, it's great that you will help more people understand the effects that autism will have on the family. Grace has 3 siblings, and whilst it has significantly affected their lives, what we brings to our family far out weights anything that they might miss out on because they have a sibling with autism. From an economic perspective, it's a significant commitment for any family and requires a lot of sacrifices to be made. And it's physically extremely demanding and Grace doesn't sleep very well so we will have disturbed night sleep every night, so it can be quite exhausting. And emotionally, early on when the news of the diagnoses was quite raw, it can be incredibly draining. But now for us, we are constantly rewarded by all the amazing things that Grace is able to do. Watching her develop, even at a slower pace brings a lot of joy.

Nick asks: have you requested specific apps or app changes to help with the communication?

Anne Masi: I feel the developers of the communication app are really listening to their client and the community that uses them, but at this stage I am happy with the app and it's functionality.

Nick asks: Was there any learning time required for your daughter to be able to use the ipad easily?

Anne Masi: Yeah, there was a period of learning and a period of adjustment. We do a lot of cognitive and academic development using various resources and the iPad reinforces a lot of what we are teaching Grace, but also what we are finding is that Grace is now learning things from the apps on her iPad and showing those skills to us in other ways. But it didn't happen over night, and it also required supervision and direction.

pinkandblue asks: Also, how long did it take you to teacher how to use the app with the confidence she showed on the show? How did you go about doing it?

Anne Masi: We've been using this app for about 2 years, we initially used it in a very simple way. For example to answer yes and no questions and for Grace to be able to express her wants and needs. The iPad has been a great motivator for Grace and the independence it gives her is also a motivator, which has helped her develop an willingness of learn new things using the iPad.

LeeP asks: If the goal is to improve the childs verbal skills is there a danger that they become too dependent on the ipad?

Anne Masi: If a child is showing the ability to vocalise, then it is really important to continue to work on those skills, even with the use as this iPad app. Though we would continue to do speech therapy, and develop oral motor skills as well as using the iPad to communicate.

275bec asks: Did you find the ABA program beneficial?

Anne Masi: Definitely, for us it has been an excellent way to develop Grace's cognitive, academic, growth and fine motor skills. To address behavioural issues, and to develop social and communication skills. It's a structured measured holistic approach to improving the child's level of functioning. And lays a good foundation on which to build.

motherof2 asks: Can you use the autism apps on android tablets instead of ipads?

Anne Masi: Some communication apps are available for android, but I'm not sure if proloquo2go is available for androids.

Davob asks: Hi our child can't talk yet either but is trying to vocalise, we worry using an app like this might discourage speaking.. anything thoughts? anything to suggest for vocalisation?

Anne Masi: I think it's really important to continue to work with a speech therapy and home based program to develop the vocalisation in parallel to using an app like this. The beauty of encouraging the use of a communication app is that it helps the child develop the intent to communicate. So once they work out that they can satisfy their wants and needs to ask for things, that will increase their motivation to communicate and their intent to communicate.

chriswithers asks: did you try pecs and is the app more successful than pecs?

Anne Masi: We used PECS initially before we used the communication app, but we found that Grace responded well to the communication app, so whilst we now might still use some PECS visuals in the home, and they are used at the school, we only use the iPad for communication.

Nick asks: was proloquo2go easy to setup and use? some are saying it was a little difficult to use

Anne Masi: I haven't found it difficult to use, it took a little bit of time to get to know all the functions, but I read the manual and now it's very simple to use.

Philby asks: have you been able to teach others how to to communicate with Grace over the years, when I visit my sister I find that I have to learn a new set of words on how to communicate. How do you teach others to communicate to Alice?

Anne Masi: I think the key to communicating with a non-verbal child is to have patience and to look for opportunities to communicate with them. For Grace, she is extremely responsive to people who do take the time to communicate with her and take the time to get to know her. It helps people to communicate with Grace is they know what interest her and what motivates her so perhaps finding out that sort of information may help the communication process.

Tansz asks: What was the most memorable thing that Grace asked or did on her ipad that became the most pivotal point for her progress and how it made you feel ?

Anne Masi: That's a great question. The first time Grace used the communication app independently was a moment of great joy and in some way the pivotal moment. It wasn't so much what she said, it was that she had a voice and she was independently expressing herself, not others speaking for her.

Interviewer: Anne, unfortunately, we are out of time, do you have any final comments before we close?

Anne Masi: Thanks everyone for coming tonight, hopefully the information that we post tomorrow might help answer your questions and provide further useful information for you. And for those dealing with autism in their family, please try and say positive and try and focus on the positive development and hang in there!

Interviewer: This concludes our chat with Anne Masi, Sunday October 21, 2012.

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