My name is Lisa Domican, and I am an Autism Mum. Both my daughter Grace who turned 20 last month, and my son Liam who will be 22 soon, have autism. Real proper full on autism. 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 on the street to be told how beautiful he was. 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 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. He made sounds but didn’t speak or try to imitate anything we said.
We had friends with a daughter just slightly younger than Liam and I remember seeing her watch a children’s TV show where the characters sang and danced. This little girl was up on her feet trying to copy their moves; while Liam ignored her and the show. He had things to put into rows.
Despite my fears I was firmly in denial at first. Liam was perfect in my eyes, and he would catch up on his own. My husband convinced me to bring Liam to our public health nurse and we got a referral to a Paediatrician who agreed to see us regularly every few months. By this time I was pregnant with his sister and could no longer run after Liam when he escaped out of the house and into the paddock.
He became expert at dodging me when I couldn’t bend and I had to super-childproof the house to keep him safe. The doctor we were seeing was quite elderly, slow to diagnose and took the view that we should give it “more time” However, we knew by then about waiting lists, and had to ask for a diagnosis which allowed us to get him into an Autism outreach course near 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. One day I asked Liam’s teacher, “Is there any doubt?’ And she said, ‘He is very autistic. Very’.
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, born 20 months after her brother. Gracie was breech, and delivered by a planned csection 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 coloured 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. Liam eventually got accepted into an autism unit attached to a mainstream primary school and under the instruction of the senior teacher, Liam started The Picture Exchange Communication System (PECS), it works by allowing the user to make sentences out of a sequence of pictures, then present them to be read. It ensures a connection between approaching someone and sharing the picture and by reading it out loud together, they learn to copy your speech. It is naturally rewarding as they get exactly what they want, and Liam was really quick to pick it up.
Liam was obviously reading the cards and memorising the words visually, which helped him to learn to speak independently within 3 months. For Grace, however, the process of learning to communicate was much slower. I had to do it all myself, as the teacher in her Autism pre-school had not been trained, and there was no access to a speech therapist.
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 pictures, 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, colours and numbers. She could put together a picture sentence that said “ I want eight black triangle toast”, meaning she wanted vegemite toast cut into eight triangles. But she still couldn’t say “I want Toast”.
I went on more courses, hired home tutors which we paid for with bank loans (for “Home Improvements”) and persisted. We kept using PECS. The alternative was a speech generating device that cost about €10,000 and I have to say I’m glad it was never offered. You see when Gracie was just six, she began to make sounds, which became words!
One day we were using an animal pop-up book to ask Gracie ‘what do you see?” and she got out her picture strip and pointed to the photo and said “Le-Lion”! It was actually a tiger but close enough! The tutor and I were in tears.
It was still difficult for most people to understand her approximations, she would say “Dink” for drink or “Tote” for toast. 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. Gracie usually gets what she wants!
One day we were playing a game at the pool where she would make a sentence with her PECS strip to say “I want Mummy jump” to ask me to do a huge torpedo splash into the pool. Gracie is very motivated by water games. After a few goes, she got fed up with getting out of the pool to use the pecs book 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. 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 with the phone company. They were very interested in helping and agreed to donate a phone to me as part of their Corporate Social Responsibility 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 young iPhone app developer, Steve Troughton-Smith who was making quite a lot of money creating games. 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. Later that same afternoon, Steve emailed me a photo of a mockup – he totally got what I was trying to do!
I drew up a set of pictures to go in ‘folders” and found a local digital artist to create the images which Steve put into a prototype on my phone. Now that we could make proper sentences, the iPhone came out everywhere with us, and the old pecs book stayed home.
I started using the iPhone’s camera to take photos of things that Grace wanted, saving them in the device album to be later added to the app. 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, I would know she wanted it. It was a true leap in theory of mind; which would not have been possible in a static pecs book.I told Steve about this and he incorporated the camera into the app so that users could take their own photos.
We were given 4 more phones to install the App on and test with four other children in Gracie’s school; it was a success! It was time to go live on iTunes. We needed a name that couldn’t be confused with any other app and it was Steve who said that it was my daughter, and her determination that had inspired and enabled the development of the app. And so it was “Grace” that was submitted to Apple and eventually approved late on the evening of the 11th March 2010. 10 years and 30,000 downloads later Grace 4:0 is available in 8 languages in many countries around the world.
Grace App encourages parents, carers and therapists to connect with the learner and help them learn to communicate independently. It doesn’t have to replace speech, as in fact it encourages independent vocalisations with images that ensure the user is understood. As with all AAC (What is AAC?), the research consistently proves that giving someone the ability to communicate independently by alternative means, will often lead to words.
It is my theory that when you are not longer frustrated and shut off, you find it easier to understand and begin to imitate. Giving the user the power over their communication has also lead to many families experiencing the joy of shared attention for the first time. When a user takes and adds photos of what they are interested in, a parent or carer can get involved in that interest which in turn encourages more interaction and positive feedback. Typical developing toddlers do this the first time they point at a dog or a helicopter, expecting you to get as excited as them.
For us special parents it is more of a puzzle to work out what makes our kids tick, but when they take a photo on the app just to share it, the reward is enormous.
There are other communication aspects to the Grace App which I felt very strongly about including, such as the ability to ask for help or to say where and when they are in pain. I feel that so much of what is considered “inappropriate behaviour” is actually just an inability to express very important needs. As with any human being, Autists deserve to have long, comfortable and happy lives as free from pain and frustration as possible.
I’ve tried to use my profile as a communication advocate to make people aware of the needs of the non-speaking to express themselves and have won a number of awards. However, the real reward has been my daughter developing her independence and choosing to interact with me. We have become closer and she finds value in me. If I can bring that to as many other parents and care-givers as possible, then this journey has been very worthwhile.