Lisa Domican can not code, but yet she co-developed an app to support her autistic children. Read the inspring story how Lisa Domican gave the power of communication to her own children and others who needed it with an app.
The story of Lisa Domican, her kids and the Grace app is the perfect example for the motto of this year’s Ada Lovelace Festival: ideas to change the world.
At #ada18 you will get the opportunity to be inspired by and connect with like-minded people and share your own ideas and let them thrive.
Interview with Lisa Domican (Grace App)
Lisa, probably everyone has heard of autism, but might not know exactly what kind of effect the disorder has on the ones affected.
Lisa Domican: Autism is a sensory disorder that affects everything a person sees, hears, touches, tastes, feels, the sense of balance, where they are in space and their awareness of their own internal body. They can be over or under sensitive in any of these areas so it affects everyone differently. It doesn’t necessarily affect intelligence hence but it can make it very difficult to learn, so you have to change and adapt the way you teach.
Your kids Grace and Liam are autistic. What were the greatest challenges when they were little?
Lisa Domican: Communication and the ability to learn by imitation was the first challenge. My son was highly visual but didn’t look at people or try to imitate words. Instead he led us to things, or used sometimes quite disruptive behaviors to get the outcome he wanted. He was very active and busy and as I was pregnant, then nursing his baby sister, I found it exhausting trying to keep up. It took a dedicated teacher to show me how to use pictures with words to teach my son to communicate his needs, which quickly lead to him saying the words. I learned to follow his interests; he liked animals and certain kids tv shows and used this to connect with him, to encourage him to learn and connect with his world. He was still a really challenging boy, and it took a lot more work to help me understand and manage his behaviors in order to support his learning. I’ve been on a lot of courses about autism and behaviour science. My daughter seemed to be even deeper into her own world. She stayed very close to me physically, and seemed uncomfortable whenever she wasn’t being held. She didn’t have any babble or imitation skills either and just cried a lot. I’ve learned that her autism affects her physically, she actually needs deep pressure massage and exercise just to feel comfortable in her own skin. It was much harder to find a way to engage her interests, to encourage her to connect.
How did you try to enable them to communicate?
Lisa Domican: With both my children it was an evidence based picture exchange system called PECS. The system is based on observing what the child likes most, creating a picture of that and then showing them how to hand over the picture to get what they want. It teaches them to interact with another person to get their needs met and is a foundation for communication. My son learned very quickly to say the words on the picture cards and within a few months he could speak independently. My daughter learned to use the pictures very well, but without speech. By age 6 she had a lot of pictures but no words.
And this system is the foundation of the Grace App, right?
Lisa Domican: Yes! It worked so well but it limited the user to what pictures were available which meant carrying a lot of pictures everywhere we went. When Gracie was 8 she started saying the words as she pointed at the card, so it was even more important to keep the visual prompts consistent as her words developed. At this time I saw an advertisement for the iPhone and thought that it might be possible to move her folder of images to a digital folder on the device. I talked the CEO of Telefonica into giving me a free iPhone and began to play with it. It was then I realized that we could not only save and store a vocabulary of pictures, we could take photos on the spot. We meaning me AND Gracie. For the first time she had control over her own vocabulary. This was crucial in the development of what became the App.
Did you have any developer experience before building the app?
Lisa Domican: Oh dear! Is now a good time to tell you I still can’t code? What I did was create the prototype with Gracie, whose aptitude for using the iPhone to get what she wants made it possible. When it came to coding, I couldn’t even use photoshop. But what I did do was tell my story to absolutely anyone who had anything to with technology and in 2009 that meant smart phones. I read an article about a young iPhone “apps” developer who was making a lot of money creating 99cent games for iPhone. I wrote to him explaining what I was trying to do for Gracie and he replied “I think this is a good thing, I’d like to try and do it” His name is Steve Troughton-Smith (find Steve at GitHub here). When I met him in person, he was only 19 and had to get a lift from his Dad to the coffee shop where I explained my concept. I brought Gracie’s picture book and our iPhone but to really express my vision I ended up drawing a diagram on a big piece of paper. I later found out this was called a schematic and it was what real developers used to map out the functions of the App. The symbiosis between my vision, Gracie’s persistence and Steve’s ability to interpret this and code it to suit resulted in what Steve decided we should call Grace App. So I guess my talent was to recognize what the existing consumer technology could be used for in supporting my daughter and finding a way to make it accessible to others. I’m still doing this with existing apps and technology like the Fitbit. I’m also really good at talking to people to explain what I need and asking for them to do it. Even if I still can’t code! I will learn some day.
Your kids are now somewhat around 20. Do they use Grace App? In what kind of situations?
Lisa Domican: My daughter still carries an iPhone 6 in a sturdy cover in a little custom made purse she wears on a shoulder strap. She can say 2-3 word sentences independently now: but uses uses the Grace App to ask for new things, or to communicate with people who don’t understand her speech. It’s always there if she needs it, but it’s very discreet as every 19 year old has a smart phone. My son has 6+ in a sturdy cover but he doesn’t use the app to communicate as he is very verbal. Instead we use texting, iMessage and even Facebook to support his language development and understanding. He takes photos while doing activities at his adult day centre and uploads them to his Facebook with a comment. It’s a visual prompt to talk about where, when and what he has been doing and he has that visual in his mind to help him answer. It also allows others including his speech therapist from his old school to comment and ask him questions using the goals they worked on together. It’s a lovely way for people who know Liam to keep up with his personal development and I think it helps other parents to see what’s possible. Lastly, as an anxious Mama I can see exactly what they are up to using “find my iPhone” to track them. This gives me so much peace of mind. Technology has really enhanced the opportunities and quality of life for me and my family and I’m very grateful that it exists.
Lisa Domican at #ada18
Lisa Domican, co-creator of Grace App and mother of two autistic teenagers; 19 year old Grace who inspired the Grace App and Liam, who is now 20. As a parent of two young adults with Autism and a severe speech disability,
Lisa is a staunch advocate. She saw the importance of giving the power of communication to her own daughter and others who needed it. Having set up and implemented a picture exchange communication system for Liam and then Grace in 2003; Lisa went on to digitise this simple system creating the Grace App for Communication which has had 30,000 downloads from iTunes since launching in 2010. This simple App empowers the user to communicate their needs independently and supports the inclusion of people with autism in the mainstream on their own terms. According to Lisa ‘My goal is to engage and inform as many educators, therapists, parents, carers and service providers about the importance of independent expression”