A family’s experience of diagnosis and about participating in the SACS research at OTARC
By Marita Beard (Heidi’s mum)
The Early Days
I first heard the label autism applied to my youngest daughter when she was 18-months old. We had moved house and it was our first visit to the maternal and child health nurse in our new suburb. She tried to get Heidi to mimic pouring a cup of tea. Heidi sat in the corner, with her back to us and banged the teapot against the wall. After meeting us for all of five minutes she asked, “Have you considered autism?”
We left and I sat in the car park stunned. I knew my little girl was different, but assumed she would grow out of it. Her older sister did everything before the books said she should. The only area Heidi was advanced in was moving, escaping.
It was a few weeks later that I found Heidi straddling our back fence having climbed it all the way to the top. There was a major shopping centre across the road and very heavy traffic. This behaviour was scary but normal. She was always on the move. We went through four couches during her toddler years. She loved to jump and jump and jump and crash and bang and jump and jump and jump. Our small unit had no room for a trampoline in the courtyard. We compromised with inflatable castles and Jumpolines in our lounge room.
Heidi rarely slept, her little body couldn’t seem to stay still, unless she was sick. I remember the relief of her sleeping the night through, only to discover she had a 39C fever the next morning. A full night’s sleep was rare and I was very sleep deprived.
When Heidi turned two we visited a different maternal and child health nurse. My sister-in-law recommended her after witnessing first hand Heidi’s hysterical terror when I walked out of the room briefly. “That isn’t normal.” Her separation anxiety was so extreme that Heidi could never be alone. I was still clinging to the idea that Heidi would grow out of it and she was just a little stubborn like her Dad.
We visited this new maternal and child health nurse, my girls happily playing in the waiting room, while I talked to the nurse, door open so both girls could see me and freely run between rooms. The nurse wanted to weigh and measure Heidi, so called her name to get her attention, Heidi kept playing. I added my voice and called her name. Nothing. No response. Then I called, “Hugs?” Instantly Heidi was running to me, throwing herself at me for big bear hugs.
“Does Heidi respond to her name?” The nurse asked.
“Not really, but she loves hugs,” was my answer.
A visit to the CDU
The nurse asked some more questions, filled in a questionnaire and we were referred to La Trobe University as part of a study into social attention and communication through the Child Development Unit (CDU), now OTARC.
I was nervous about our first visit and not sure what to expect. Tests at university filled my head with images of halls filled with tables and endless pages of questions. It turned out to be fascinating. Heidi and her Dad went into the assessment room and I sat in another room and watched through a one-way mirror. Heidi and the tester played with some toys, a few of the games they did were similar to things I had seen the Maternal and Child Health Nurse try to do with Heidi, and some things were new.
That first visit Heidi was obsessed with the bubble machine.
“Bubbles” was Heidi’s first word and one of the few consistent words that she spoke. Heidi loved bubbles. I remember getting really excited when during the test Heidi said, “Want bubbles.” At two and a bit years old it was the first time Heidi had clearly asked for something.
Josie (Dr Josephine Barbaro), who did Heidi’s testing, was lovely. She was the first person who had talked to me about autism in a way that made it seem not scary. The way Josie and her team communicated with Heidi was eye opening. Prior to our visit we had often found it frustrating to communicate with her, but they seemed to have some secret that got Heidi to listen and respond, not always but more than we had been able to. I left feeling it was possible to learn to talk Heidi’s language. We just had to learn how.
We commenced speech therapy after our first visit to the CDU. It was one of Josie’s suggestions that I felt would make the biggest difference in our lives. Our speech therapist introduced us to Picture Exchange Communication (PECS) and changes started happening at home, slowly but surely Heidi started to communicate.
My next visit to the CDU was alone, to do the parent assessment. It was oddly peaceful, being alone with another adult, a rarity in my life at the time, given Heidi’s extreme separation anxiety. I completed the parents’ questionnaire and Josie told me that Heidi was certainly on the autism spectrum. Still a shock, even though by then I was expecting it. Friends who were babysitting my girls that day reminded me that even with the label Heidi was still the same Heidi she had been before.
And then came the time of information overload. Trying to learn more, the Internet presenting so many conflicting voices and a plethora of scary stories. What stood out was that, thanks to Josie and the CDU, we were in a very lucky minority. Our girl had been diagnosed early and, if we could get intervention straight away, her life as an adult would be much happier.
Our paediatrician was very negative about the diagnosis and told me we needed to wait till Heidi was older – 4 years old ideally. However what I had read online contradicted that. So many parents said they wished they had known sooner, and gotten help earlier. As a parent I want to be able to look my adult children in the eye and say about their childhood, “I did the best I could.” So we found a new paediatrician who was willing to work with us and listen to the opinion of other professionals.
We got onto wait lists for early intervention and continued with our speech therapy sessions, the research continued as I looked for evidence based interventions that had research behind them, not just parental anecdotes. It was frustrating. Thankfully we were able to start early intervention the year Heidi turned three. Her diagnosis at 2-years old had opened doors for us at a stage when many families are just starting to get their family doctor / maternal and child health nurse / paediatrician to listen to their concerns.
At early intervention Heidi learned about communicating her needs and wants, social interactions and other vital life skills. At the same time I was also learning. The speech therapist taught me about social stories and picture schedules. The occupational therapist introduced us to sensory diets, and the various tools we could use to calm Heidi down.
Here is an excerpt from my blog six short months after our visit to CDU.
“In 6 months so much has changed. We used to have to deal with poo painting at least once a week. Heidi would cry and tantrum constantly because she was so frustrated. Now we know how to talk to each other. There are still periods of frustration but we all have learnt ways to express our frustration better. Only six short months ago I could not go to the toilet without Heidi screaming in fear and suffering separation anxiety. Now I can not only go to the toilet alone but I have a group of trusted friends and family who Heidi will stay with for a couple of hours while I go out.”
Life at home was changing. Heidi started talking and sleeping! Those two things alone were huge and impacted on the entire family. If we had waited until Heidi was 4 years old, as our original paediatrician suggested, I honestly do not think Heidi would be attending the mainstream primary school she now attends. It is thanks to the two years of early intervention and year of Pre-Prep that we were able to achieve so much developmental progress.
I’ve written in more detail specifically about the ADOS test here.