The Autism Spectrum Australia 2021 Recognition Awards Ceremony held in early April was a joyous celebration of the achievements in resilience, diversity and creativity of the Autistic and autism community.
Congratulations to Dr Jill Ashburner, recipient of the inaugural ARCAP Research Award. Jill is Manager of Research and Development at Autism Queensland. Her body of work spans 15 years and focuses on:
- sensory processing issues
- education of students on the spectrum
- professional development of clinicians working with children on the spectrum
- school bullying
- written expression challenges of students on the spectrum
- service delivery via remote technologies
The interview below, reveals more about Jill’s motivations and experiences as a researcher.
What has been your motivation for spending the past 40 years working in the disability sector?
It sounds a bit cliché, but the main motivation has been the desire to support people to live lives that are meaningful to them, to determine their own future and access the same opportunities as others.
What part of your work do you enjoy the most?
Researchers are essentially curious people, who are always keen to learn more, and that is definitely the case for me. The work is most satisfying when you feel that it can make a difference to people’s everyday lives.
What are the biggest changes (for the better) that you’ve seen in disability research during your career?
The social model of disability has fundamentally changed disability research for the better, in that, I hope, research has become more respectful to neurodivergent people.
Neurodivergent people have moved from being subjects of experiments to informants whose role is to enlighten others of their way of seeing the world, and importantly active participants in the co-design of research. The proliferation of disability research in recent years has also been remarkable to the extent that it is challenging to keep pace with it.
You’ve spent much of your career focused on the education of children on the spectrum. Is there any one child who had a major impact on you or your research?
I recall being in a large double classroom, in which over 50 grade two students working on their projects, many of them trying to catch the attention of a somewhat beleaguered teacher. The noise level was close to ear-splitting, and there was of lots of crowding, visual clutter and frenetic movement of students around the room. A young autistic student was leaning with his head against the wall with his eyes closed, appearing to be attempting to block out the noise and unpredictable chaos. I felt some sympathy for his predicament as it was a huge relief to me to escape this frenzied environment. This experience taught me that many students (particularly neurodivergent students) benefit from learning environments that are structured, quiet and predictable.
As a researcher, have you ever had an ‘aha moment’?
During my PhD research, I observed responses that were somewhat contradictory according to the prevailing sensory processing theory, after doing about 90 sensory assessments in a row. I commonly observed high scores recorded in the same child for: “Seeks to make noise for noise’s sake”, “Responds negatively to unexpected sounds” and “Doesn’t respond when name is called but you know the child’s hearing is okay”. I observed the same issue over and over again for touch processing with the same child recording high scores for “Touches people and objects to the point of irritating others” and “Responds emotionally and aggressively to being touched”.
It has often been assumed that people are generally either hypo-sensitive to sensory input, or generally hyper-sensitive to sensory input, but research does not support this assumption. It is also assumed that some people seek out strong sensory stimuli because they are hypo-sensitive and need a strong stimulus to register the input, but this also does not align with my observations.
My ‘aha’ moment was the realisation that people are often more able to tolerate sensations that they can control and that are therefore predictable. They may therefore enjoy making noises and yet are bothered by noises that other people make, because they are unexpected and unpredictable. If they are absorbed in an interest area, some people may not register some sensory input, despite being hyper-sensitive to some forms of sensory input (e.g., not responding when someone calls their name despite being hyper-sensitive to noise).
What do you think are the most important things to consider when developing translational research projects?
It is important to determine whether or not the research outcomes will be useful to neurodivergent people and their families in their everyday lives, rather than following an academic interest with little real-world application. Research outcomes also need to be able to be feasibly implemented in the real world. For example, there is little point in recommending strategies that teachers cannot realistically implement in their classrooms when the multiple demands on teachers are considered. There is also little point in designing programs with exorbitant training costs in order to meet fidelity requirements that are difficult to achieve in real-world settings, if service providers are unable to absorb the cost of training.
Research should also include participants with a broad range of cognitive, speech and language abilities. Neurodivergent people with cognitive and language challenges have a right to evidence-informed services, and service providers have an ethical obligation to provide services to people with a wide range of abilities. Translation of research findings is likely to be more effective if ’end-users’ of research including neurodivergent people, their families and service providers are engaged in the research design from the outset.
What do you think the future holds for autism practice research in Australia?
Further research is needed on ways to improve the quality of life, happiness, and mental health of Autistic people. To a large extent, this will involve making society more inclusive. For example, childcare services, schools, tertiary education and workplaces need to become genuinely inclusive and supportive of diversity. Genuine inclusion should involve effective supports that are readily available to accommodate neurodiversity. I hope that future research will help us to understand the type of supports that are most effective and that can be embedded seamlessly within mainstream services. Future research may also advance the quest of neurodivergent people for self-determination and self-advocacy, so that they have greater control over their own lives.