Delving beneath the surface to understand what drives different behaviours can be an illuminating and unexpected experience for parents of children on the autism spectrum. It’s an exercise often visited by Griffith University researcher Dr Dawn Adams when guiding community workshops, one where she regularly uses the ‘tip of the iceberg’ motif.
For mums and dads dealing with copious and complex information about autism, it’s a simple metaphor they often enthusiastically share with other relevant and invested parties. It is not unusual, some days or weeks later, for a schoolteacher to touch base with Dawn Adams to continue the conversation. And so a vital research network pulses and reproduces.
“A parent might have shared one of our videos online or an abstract from a research paper with the teacher who wants to know more,” Dawn said. “It might be on our Facebook page, where we try to both learn from parents and share with parents.”
This network of researchers, parents, educators and others – be it virtual or in person – has a rewarding regenerative function as it involves those with an interest, with something to say and with a need to know more. It often generates a sample of participants suitable for a study by survey.
“It’s an exercise in outreach without leaving the office,” Dawn said.
This interactive approach to research has remained pivotal to the work of Dawn since she left Britain to join the Autism Centre of Excellence at Griffith’s Mt Gravatt campus. Guided by her own sociable, engaging personality, she has consistently tried to strike a balance between clinical research and practical human interaction since qualifying with degrees and doctorates in psychology, clinical psychology and clinical neuropsychology at universities in Birmingham, Southampton and London.
“Sometimes it is easy to forget you’re dealing with people when you’re looking at a dataset of numbers on a spreadsheet. That’s why I think regular engagement with the people at the heart of our research is crucial,” she said.
“Our work is highlighting how important it is to gain information from multiple people about a single behaviour or presenting difficulty. I passionately believe that every informant has something important to add.
“It’s not that one person is right and one person is wrong. If they don’t agree, that’s actually more interesting. Then I want to know what it is about the different places that may be either supporting or contributing to the difficulty or what factors may be leading to the misunderstandings or misinterpretations. This is all critical to let us reach a shared understanding. It’s not about one person’s understanding being right; it’s about getting the right understanding.”
One emerging line of thought being enriched by the interactive approach is recognition of experiences of anxiety – both traditional and atypical – among children on the autism spectrum. In a new study carried out by Dawn Adams, Kate Young, Kate Simpson and Deb Keen, parents described presentations of anxiousness after observing their children’s behaviours in a number of settings: home, school and the wider community. It is an innovative exercise that also demonstrates the uncertainty around standardised anxiety measures.
“There is a constant need to develop or modify these measures,” Dawn said. “In the past, people did not see and recognise the anxiety because they thought it was all [part of] autism. But a greater understanding about the complicated overlap involving autism and anxiety has been emerging during the past five years.”
The multiple-settings study reveals that anxiety presentations among children on the autism spectrum may differ depending on the setting. This is a new discovery, which helps to take related research into new territory. Replicating the study with informants other than parents who are able to observe and comment on behaviour within one or more of the settings is an inviting next step, and the potential participation of teachers in this respect emerges.
“We really need to focus on the fact that everyone presents differently in different contexts. People present differently at home and at work.” – Dr Dawn Adams
But as a greater understanding of autism inches forward, each new step also calls for care and consideration. While schoolteachers of children on the autism spectrum have gained a greater understanding of autism during the past decade, the addition of anxiousness and presentations of anxiety to their professional knowledge bank requires care as the research extends valid and reliable methods of measuring anxiety-related behaviour.
“We’re not asking teachers to diagnose anxiety,” Dawn said. “We’re suggesting they consider it if a child is showing signs which could be anxiety, to be aware of the possibility and to try and support the child. A child shutting down may not be a child refusing to learn – it may be that the child just needs that moment to manage their emotions, or maybe they’re too anxious to respond or process.
“We really need to focus on the fact that everyone presents differently in different contexts. People present differently at home and at work. We know that parents often tell us their child behaves very differently at school.”
And that pulsing network, with its different voices and viewpoints, will again play its part in the design of innovative research approaches that lead the research on autism forward step by step.
* The Autism Centre of Excellence, a multidisciplinary research initiative, seeks to support learning for people with autism from early childhood to further education and employment. The Centre collaborates closely with Education Queensland and with the Federal Government’s Department of Education and Training. It is placed within Griffith University’s School of Education and Professional Studies.