In the latest article of our Innovation series, which celebrates and raises awareness of creative products, services and initiatives aimed at the autistic spectrum, Lisa Domican writes about her experiences of Autism and her creation of the Grace App, which is an app for smartphones and tablets aimed at improving communication skills for people on the autistic spectrum, including Aspergers Syndrome.
Liam was a beautiful baby born in a hot December in Brisbane in 1997. You would expect his mother to say that but even the midwives who delivered him said so and I was often stopped in the supermarket by grandmotherly type ladies who wanted to admire him. He was a happy alert little boy and obviously clever; leaning out of his stroller at 18 months to look at road signs.
But leading up to his second birthday my husband began to ask questions about his development. Liam wasn’t talking, he would not make eye contact and would not turn to look at you when you called his name. He would climb on things to get to a cupboard or lead us by the hand to get a drink but would not ask for it. We had friends with a daughter just slightly younger than Liam and I remember seeing her watching a children’s TV program called ‘Hi 5’ where the characters sang and danced. This little girl was up on her feet trying to copy the dancers; while Liam ignored her and the show.
Despite my fears I was firmly in denial at first. Liam was perfect in my eyes, and he would catch up on his own. But eventually, my husband convinced me to bring Liam to our public health nurse and we got a referral to a Paediatrician who we started seeing regularly every few months.
Eventually we demanded our diagnosis of autism, because the old Doctor we were seeing felt that that there was still a question mark, that we should give it “more time.” However, we knew by then that we needed to get on to waiting lists, and the diagnosis allowed us to get him into the Autism Intervention Course at the Autistic Association of Queensland in North Brisbane where we lived at the time.
We completed the course and Liam got a place in the pre-school class at the centre.
Even then, I was still hoping that maybe he had Asperger’s or something else. It was a school for Autism and Liam’s behaviour was similar to many of the pupils in the school; but one day I asked Liam’s teacher, “Is there any doubt?’ And she said, ‘No. He is very autistic.’
The next few years passed in a blur, as we tried to secure services and struggled to cope with Liam’s increasingly difficult behaviour, and my attention was divided between Liam and his little sister Grace, who was born 20 months after her brother.
Gracie was breech, and delivered by a planned c-section at 38 weeks — “before she was ready,” in my opinion. The midwives had tried to turn her but she was tucked up so tightly under my ribcage, there was no chance of a natural delivery. A sign of the tenacious personality that was to come!
The day she was born she was put onto my chest, and she stayed there for the next two years. She wouldn’t sleep on her own, wouldn’t stop feeding, and I thought it was because she’d been forced into the world “too soon” To me, Grace was fine. But my mother said, “Look at her, Lisa. She’s not interacting. She’s not looking at anyone. She won’t wean.”
So off we went to the Paediatrician again, but this time it was water off a duck’s back — I knew why we were there and what was coming.
There was a wooden stacking toy with colored discs that you put on to each peg in the waiting room. I moved a red disc to a peg where there were blue ones and Grace went ballistic. And in the doctor’s office Liam helpfully rearranged a set of antique surgical instruments — it didn’t take much for Dr. B to write the letter of referral this time.
Shortly after this, we moved to Ireland. I started Liam on Picture Exchange Communication under the instruction of the Senior teacher in his State Autism Unit. The Picture Exchange Communication System, or PECS as it is known, works by allowing the user to make sentences out of a sequence of pictures, then present them to a Carer, Teacher or Peer. It ensures that the User approaches and practices their speech while enabling them to get exactly what they need with the pictures — lots of pictures!
Liam was just 4 1/2 when we introduced PECS at the start of the Summer 2002, but I don’t think we’d got past two pages of cards with him when we were out one day and he said “I want Toilet” independently — a good day!
For Grace, however, the process of learning to communicate was much slower. I had to do it all myself, as there was no provision for speech therapy for Grace in the State Autism Preschool that she had started in that Autumn.
I approached PECS very methodically, did the two-day course, followed the manual, bought the CD, made several different sized books for staying in and going out.
I took my data and learned everything there was to learn about it. And kept it going, for the next six years.
Grace was extremely good at communicating her needs with PECS but she relied on me to add to her vocabulary with new cards. As a Mum with two autistic kids, there was often a delay in taking, saving, printing, and laminating those new pictures.
As a result Grace was amazingly skilled at getting what she wanted using shapes, colors and numbers. She could put together a picture sentence that said “ I want eight black triangle toast” meaning she wanted Vegemite Spread on toast cut into eight triangles. But she still couldn’t say “I want Toast”
When Gracie was just six, we were doing an ABA Program with a home tutor self-funded with bank loans (we told the bank manager it was for “Home Improvements” and it was, sort of). Gracie had started to make animal sounds while playing with a pop up book and one day when the Tutor said “What’s That?” Gracie got out her cards, made the “It’s a” sentence, and then said quite clearly, “Lion” –
I will never forget it.
It was still difficult for most people to understand her approximations, she would say “Dink” for drink or “Tote” for toast. But it was enough to encourage me to continue to try and develop her vocalisations, while maintaining her picture communications as a prompt. Gracie is really smart. If she could tell that someone couldn’t understand her, she would go back to her book and make the sentence with PECS until she got what she wanted.
Eventually “Tootar” became “Cootar” — meaning “Computer,” as her articulation improved. I taught her requesting using verbs with a little travel PECS book that we brought swimming: “I want Mummy Jump” would get me to do a cannon ball into the pool. One day she got fed up with getting out of the water to make the sentence and just called it out while she was treading water: “I WANT — MUMMEE — JUMP!” I made a very big splash for her!
In 2008, when Grace was eight and Liam ten, they were finally accepted into a privately managed full-time ABA school called Saplings. We had waited five years for a place but it is no exaggeration to say it changed our lives. No more after-school home based ABA tutors. No more stress about lack of clinical support services in their State autism school. No more poorly trained unsupervised “care” staff actually exacerbating behavioural issues. I was suddenly unburdened and ready for a new project!
My inspiration for using the iPhone came when I spotted an advertisement for the iPhone on the side of a bus in Dublin. To me, the main screen of the device in the ad, which featured a range of colourful app photos, looked like an electronic version of a Picture Exchange book. At that point I realised the iPhone’s potential as a portable alternative to the existing system and made contact with O2 Telefonica who were supporters of Autism Ireland, my advocacy group. They were very interested in helping and agreed to donate a phone to me as part of their Business Diversity Program.
That summer, Gracie and I got to work, getting pictures onto the iPhone and using it to request treats in the supermarket. But we couldn’t put them in order, and that was very frustrating, because the whole point of the picture exchange system is to put words in sequential order and build sentences that prompt correct speech.
I realised that I needed help, and luckily found a newspaper article about a gifted iPhone app developer, Steve Troughton-Smith. We communicated via Facebook and finally met for the first time at the start of 2009. I brought along all Gracie’s Picture Books and drew a big diagram on the back of a shopping bag.
From that Steve created a prototype which he loaded on to my iPhone, which Gracie adapted to expertly. The Big Picture Exchange Book stayed home to gather dust and the iPhone came out everywhere with us.
I started using the device’s inbuilt camera to take photos of things that Grace wanted which I stored on the iPhone for next time. Grace watched me doing this and one day I caught her holding the phone, trying to take a picture of a toy she wanted on eBay. She could have just dragged me to her laptop and pointed to it. But I could see she understood that it if the photo was in the phone, then I knew she wanted it!
I told Steve about this and he incorporated the photo application into the app which we then tested with four other children in Gracie’s school. He submitted the app to iTunes and it was approved late on the evening of the 11th March 2010. The Grace App was born. Almost three years and 20,000 downloads later we are getting ready for another big update: in response to the hundreds of requests Grace App will be available in 6 languages by the end of March, 2013. Parents, Carers, therapists and teachers from around the world have written to ask for it to be translated as it is recognised as the App that prompts and encourages the users own voice.
The Grace App in Action
You see, the thing about Grace App is that it won’t do all the work for you — it’s not a talking box for the child, and it doesn’t let the parents off the hook either. You have to work together, and help your child learn to communicate independently. So it is really for Parents and Carers who have worked successfully with picture exchange, who want to keep developing their child’s independent vocalisations but without all the hassles of printing, laminating, and the dreaded velcro!
We have also seen the development of the Grace App User’s independent expression as a result. By using photographs which they can take and save themselves, some of our families have experienced the joy of “Shared Attention” for the first time. This is when a typically developing toddler will look up and point at something they find exciting, like an Aeroplane or a Dog and say “Look!” — just for the pleasure of sharing it with you. When the toddler has developmental and communication delays which turn out to be Autism, this may never happen, and it is one of the hardest things for the parents. That’s why I created the ‘Look’ card, for prompting and encouraging shared attention.
Grace App was a Finalist in Social Entrepreneurs Ireland Social Impact Awards and Winner of the Elevator Program for 2011
Winner of UNESCO, World Mobile Summit Award m-Learning and Education: 2010-2012
Grace App was also chosen as the Best Mobile Application in the Irish Web Awards 2010.
Being recognized for awards increases awareness of autism and helps to show how anyone can help improve the world for people with communication and learning disabilities. Public awareness of the App helps us to encourage people to donate their old iPhones to iPhones4autism.ie to pass on to individuals and schools for special needs and autism.
However the real Reward has been my daughter developing her independent speech, and spontaneously interacting with me — not because she wants something, but because she wants to share what she is excited about. We have become closer, and that’s made it all worthwhile.
By Lisa Domican
Mum of two children with autism and co creator of Grace App.
Smartphone Image courtesy of Stuart Miles / FreeDigitalPhotos.net
