Creating knowledge, creating impact: 2023 impact report

Health Science Clinical Research Award, European Academy of Childhood Disability, Professor Nora Shields

Nancy Millis Medal, La Trobe University, Dr Melanie Muniandy

Square the Ledger, La Trobe University, Professor Cheryl Dissanayake AM

Best Pitch – Perfecting your Pitch, La Trobe University, Dr Kelsey Philpott-Robinson

Field Leader – Developmental Disabilities, The Australian, Professor Cheryl Dissanayake AM

Excellent PhD Thesis in Psychology, Australian Psychology Society, Dr Melanie Muniandy

Lawrie Bartak Best Poster Prize, Australasian Society for Autism Research, Dianne Blackwell (PhD scholar)

Margot Prior Best Paper prize, Australasian Society for Autism Research, Elly Greenwood (PhD scholar)

Graduate Women Victoria Feminist Fathers Bursaries, Helen Andrews (PhD scholar)

Margot Prior Research Award, Australasian Society for Autism Research, Dr Patrick Dwyer

Shine Award, “Autism Research & Community Support”, East African Women’s Foundation, Dr Ifrah Abdullahi

Global Senior Leader, International Society for Autism Research (INSAR), Professor Cheryl Dissanayake AM

School of Psychology and Public Health Research Engagement and Impact Award, La Trobe University, Kate Gore & Lyndel Kennedy (PhD scholars)

Vice-Chancellor’s Research Award for Research Engagement and Impact – Highly Commended, La Trobe University, Kate Gore & Lyndel Kennedy (PhD scholars)

Victorian Autism Education Strategy Advisory Group, Professor Alison Lane

Victorian Autism State Plan committee, Professor Cheryl Dissanayake AM

Oversight Council for the National Autism Strategy, Associate Professor Josephine Barbaro

Australian Advisory Board on Autism, Professor Cheryl Dissanayake AM

Review of Student Eligibility Processes for Victorian Government Specialist Schools and Settings Advisory Group, Professor Alison Lane

Health Roadmap Working Group, National Roadmap to Improve the Health and Mental Health of Autistic People, Associate Professor Darren Hedley

Journal of Autism & Developmental Disabilities editorial board, Associate Professor Darren Hedley

Mental Health Foundation Australia Scientific Advisory Committee, Professor Amanda Richdale

National Autism Strategy Diagnosis and Supports working group, Associate Professor Josephine Barbaro

Amaze’s Neurodevelopmental Advisory Panel, Dr Melissa Gilbert

Neurodiversity editorial board, Associate Professor Josephine Barbaro & Dr Patrick Dwyer

Research in Autism Spectrum Disorders editorial board, Professor Amanda Richdale

Autism Research editorial board, Professor Amanda Richdale

Steering Committee Member. Mental Health and Adult Autism Project (MHAAP), Adult Mental Health Program, Monash Health, Associate Professor Darren Hedley

Autism: International Journal of Research and Practice editorial board, Associate Professor Darren Hedley

Autism in Adulthood Deputy Editor, Associate Professor Darren Hedley

INSAR membership committee, Dr Patrick Dwyer

AIR-P Network ANSWER leadership group, Dr Patrick Dwyer

Frontiers in Neurology, Pediatrics editorial board and guest editor on the second special edition, Associate Professor Josephine Barbaro

Selected Steering Committee Member, Neurodiversity Special Interest Group, Australian Association of Psychologists Incorporated (AAPi), Associate Professor Josephine Barbaro

Vice President, Australasian Society for Autism Research (ASfAR), Associate Professor Josephine Barbaro

Elected Member, Psychology of Intellectual Disability and Autism (PIDA) Special Interest Group, Australian Psychology Society (APS), Associate Professor Josephine Barbaro

We conducted a pilot study of a novel way of working together among occupational therapists (OT), teachers, and OT students – The Alert Program® – in two rural primary schools in Bendigo (St Peter’s and Kallianna) and one secondary school in Swan Hill (Swan Hill College), to enhance the wellbeing of Victorian school children in regional and rural areas.

Through The Alert Program® children learn to recognise their own ‘alert’ states using the metaphor of a car engine – too fast, just right, or too slow – and adjust those ‘alert’ states using sensory and movement strategies depending on what is required to support their learning at school.

We trained OTs, teachers, and OT students to co-deliver the Alert Program® over one school term through a single weekly 45-minute session in the classroom and assessed its impact on students wellbeing using an innovative game-based tool called Rumble’s Quest. This tool enables students to respond to questions about their wellbeing while playing a fun, quest-based video game.

This pilot study is the first time the classroom approach has been formally evaluated in rural/regional Victoria. Our data indicate that at least 30% of students attending the three schools showed wellbeing concerns before the start of the program.

Preliminary student outcomes:

The program improved students’ executive function, supporting their self-regulation and enhancing engagement with learning. Success at school is likely to improve the wellbeing of all students but especially vulnerable learners, such as Autistic students and those with trauma backgrounds.

Teacher’s evaluation of the program:

We interviewed participating teachers to understand the program’s acceptability and effectiveness. Teachers discussed how the program offers universal benefits to students and teachers, and the specific factors they felt were important for the program to be successful.

Benefits described:

• greater understanding of self-regulation (teacher and student),
• development of a shared language they could continue to use in the classroom.

Teachers reported that communication was very important to create cohesion between the teachers and the occupational therapist. Whilst teachers found the training useful, they also called for greater involvement, through co-development and co-facilitation of the program.

Funding: Kalon Salter Bequest

We conducted an evaluation of JettProof compression singlets and their effect on the self- regulation of Autistic children. We completed a review of literature and a small pilot study including six Autistic children.

Because of the strong, preliminary support for using compression for self-regulation, the project team strongly suggests doing more research that addresses current research problems and tries to discover how compression affects self-regulatory processes. The project results generally support the idea that compression and similar therapies may be a safe and effective way to improve self-regulation in some Autistic children who have sensory processing difficulties. However, this project also showed that it is not possible to draw clear conclusions about how well compression therapies work in this situation because:

• the effects are different and very personal
• researchers need to conduct more studies on specific, individual therapies in controlled settings
• the quality of the research so far is affected by small numbers of participants, different therapeutic methods, different outcome measures, and poorly described participant groups.

Funding: AusIndustry, Indasun Pty, LTD, Commonwealth Department of Industry, Science and Resources

The Victorian Early Assessment Clinic (VEAC) at OTARC is now open to the public following months of preparation, recruitment, and training. The OTARC Research Unit houses the Clinic on the Bundoora La Trobe University Campus. The VEAC currently operates two days per week and is funded by the Victorian Department of Families, Fairness and Housing, initially at $400K annually for two years. The VEAC aims to provide an affordable comprehensive needs assessment and differential diagnosis within a neurodiversity-affirming practice model to families of
children under 3 years of age with a high likelihood of Autism in Victoria.

Research and evaluation are a core part of the operation of the VEAC to:

• build workforce capability by developing expertise in early assessment and diagnosis of
  Autism by training allied health professionals, including student trainees, who will observe
  and work alongside our expert interdisciplinary clinical team (Psychology, Speech
  Pathology, Occupational Therapy).
• Inform continual improvement of the service
• allow us to measure our impact
• determine the best methods for early identification of Autism and neurodevelopmental
  differences

In our ongoing efforts to make research count in the real world, we’ve upgraded our training programs. We’ve switched to a new user-friendly platform to make our courses more accessible. We have also created a new training page on our website. This revamped hub is where our research-based insights meet practical learning, ensuring our mission of creating impactful change through accessible and innovative solutions stays on track. In 2023, we had two training programs available:

1. The social attention and communication surveillance (SACS) tool. The SACS method identifies a set of behaviours or ‘early signs’ that are characteristic of Autistic children from as young as 12 months old. Originally implemented in Victoria’s Maternal and Child Health services, more than 15 countries now use the SACS method. In 2023, we trained more than 250 professionals and students.
2. Supporting a neurodiverse workforce. This specialised workplace training was designed to support the mental health and wellbeing of Autistic workers. It has up-to-date, evidence-based information and strategies about mental health and wellbeing. These training course aims to create workplace competency in mental health and Autism. Content is available for executives, supervisors, mentors, co-workers and Autistic employees. The program was developed with generous support from DXC Technology and ANZ Bank in partnership with OTARC.

OTARC has an embedded research-in-practice program at the La Trobe University Community Children’s Centre on its Melbourne campus. Children participate daily in an evidence-based early support program called the Early Start Denver Model (ESDM).

More than 300 Autistic children have attended the Centre since it opened in 2010. The findings from research undertaken within the Centre are incorporated into a cycle of continuous evidence-based improvement. This cycle has been pivotal in the development and implementation of the EDSM in inclusive (mainstream early education) and specialised (Autistic children only) settings, providing a solid foundation for the program’s effectiveness.

A group version of the EDSM (G-EDSM) was developed within the Centre in partnership with University of California, Davis and this model has been adopted across 7 early learning centres in metropolitan Melbourne and internationally (e.g. Every Child-US) following specialised training by the team, evidencing significant knowledge translation to end-users.

39 children attended the children’s centre each day across settings in 2023.

Honours

• Zehra Al-Fahdawi
• Emily Reuter
• Opia Inyasio
• Tori Barnett
• Kelsi Bartzis
• Kaileigh Serle
• Meaghan Smith
• Katrina Alford

Student placement:

In 2023, La Trobe University, led by Beth Radulski (Manager, Neurodiversity Inclusion Prevention and Culture and OTARC PhD scholar), launched a new placement program for ten undergraduate students to undertake up to 300 hours of industry placement to gain work experience and to help make the workplaces where they train more inclusive. We hosted our first student, Josephine Ho, for two days in 2023. Jennifer shadowed our professional staff and OTARC’s Director, learning how our roles facilitate world-class Autism research. We hope to host more students in the future.

We invite leading international and local scholars to present their research to OTARC researchers, our affiliates and the wider La Trobe community. The seminars covered a wide range of topics, including:

• sensory experiences
• caregiver practices
• health and wellbeing
• early literacy services
• coping strategies
• self-regulation
• psychological support for Autistic individuals.

Speakers: Professor Alison Lane, Professor Julia Looper, Dr Brittany M. St. John, Dr Lauren Lawson, Milly Romeijn-Stout, Dr Melanie Muniandy, Associate Professor Karla Ausderau, Dr Kelsey Philpott-Robinson and Dr Rebecca Flower.

We would like to acknowledge the generosity of our speakers and the audience for participating in the OTARC Seminar Series.

Watch the 2023 Seminar Series on Vimeo

Community events

Mental health & wellbeing for Autistic young adults

The panel discussion featured OTARC’s Dr Simon Bury, OTARC Affiliate Dr Lauren Lawson and mental health advocate Jessica Davis. It offered practical advice, tips and knowledge for supporting the mental wellbeing of Autistic young adults, their family members/carers or supporters and care professionals.

Intersectionality: What is it and why it matters in Autism research and practice?

This public lecture by our new Advisory Committee member, Professor Brian Boyd, focused on the impact of race and sexual and gender diversity on the outcomes of Autistic children and youth and their caregivers as part of a broader understanding of intersectionality theory.

OTARC research showcase

This event showcased a sample of our current and proposed research projects across our four program areas. Our senior and junior researchers presented 10-minute rapid-fire talks. Attendees rated the event 4.2/5 and provided valuable feedback to improve neuro-inclusivity for future events.

Feeding challenges in Autistic children and supporting Autistic children & their families with feeding challenges

OTARC’s Honorary Fellow and Fulbright Fellow, Dr Brittany St John, delivered two presentations on feeding challenges and Autism, ideas for monitoring for challenges, a summary of current evidence on feeding, and information on ongoing research opportunities families can participate in.

Student event

United in Body and Mind: School of Psychology and Public Health (SPPH) higher degree researcher student conference – 114 attendees

OTARC PhD scholar Lyndel Kennedy, with Deniz Senyel, Deanna Tepper, Jenn Lee, Setho Hadisuyatmana, Sowmya Malamardi, Anteneh Ayelign Kibret organised the conference. It consisted of five panels (academic and student presenters) including:

• writing literature reviews.
• participant recruitment
• ethical use of AI in research
• post-PhD career pathways
• writing ethics applications

Dr Brittany St. John is an occupational therapist, a Fulbright Postdoctoral Scholar and Honorary fellow at OTARC in 2023. Brittany has expertise in feeding challenges in Autistic children, including characterising the presentation of challenges and intervention development. Brittany is researching effective family-mediated interventions to support families with Autistic children in managing feeding challenges during daily life. In addition to undertaking research at OTARC, Brittany delivered multiple community talks in Bendigo and presented at the OTARC seminar series.

Watch Brittany’s seminar

Professor Karla Ausderau is Associate Professor in the Department of Kinesiology at UW-Madison and an Investigator at the Waisman Center. Through Karla’s clinical practice and research, she focuses on the health and well-being of individuals with intellectual and developmental disabilities (IDD) as well as their families and caregiving communities. Karla specifically engages community organisations, families with children with neurodevelopmental disabilities, and adults with intellectual disabilities to better inform her research questions, processes, and targeted outcomes. Karla presented at the OTARC seminar series in August.

Watch Karla’s seminar

Professor Brian Boyd is the William C. Friday Distinguished Professor of Education, University of North Carolina, Chapel Hill and sits on the OTARC Advisory Committee. Brian is an expert in the fields of community-partners participatory research, implementation of evidence-based practices particularly in the early years, and health disparities and intersectionality in autism. Brian was our guest speaker at our September Research Showcase.

In 2023, we established the Autvisory Committee as a stakeholder reference group to meaningfully include Autistic people and their families in all stages of the research-to-practice lifecycle. The group comprises nine Autistic adults and is co-chaired by Associate Professor Josephine Barbaro and Perrin Date. The Autvisory Committee is working with the co-chairs to inform and guide an OTARC Participatory and Inclusive Research Framework, and provide expert lived-experience advice on strategic opportunities.

We have recruited Autvisors with consideration of communication and access needs, socioeconomic and educational background, disability, identity (including race, religion and culture), gender, age, body shape/size, and LGBTQIA+ membership to ensure that a diverse range of Autistic people are represented on the committee.

In 2024, we will be recruiting a larger pool of people, with assistance from Autvisors who have indicated an interest in co-designing research and who will be our Community Research Partners. We will contact Community Research Partners to work with OTARC staff and students on specific research projects to ensure all of our research has involved Autistic community members in its design and delivery.

Understanding the experience of Autistic working mothers

This research project was spearheaded by Autistic Master of Clinical Psychology student (now PhD scholar) investigator Kate Gore and guided by supervisors Dr Melissa Gilbert, Dr Susan Hayward, Dr Rebecca Flower, and Associate Professor Josephine Barbaro; the focus was on exploring the experiences of Autistic working mothers. This study, deeply rooted in Kate’s personal and academic background, prioritised participatory research design to address a critical gap in the existing literature at the intersection of motherhood, Autism, and employment.

Central to this participatory approach was the close collaboration with a dedicated Advisory Group comprising five Autistic adults. Their lived experiences and subject matter expertise played a pivotal role in shaping the research questions, interview guide, and recruitment materials, ensuring the project’s relevance and cultural sensitivity. This collaborative design aimed to empower the targeted community and validate their perspectives.

The research team recruited 10 Autistic working mothers, aged 34 to 50, through social media, emphasising inclusivity and diversity in participant selection. The semi-structured interviews were tailored based on the Advisory Group’s input to explore participants’ experiences as mothers and employees separately. Ethical considerations, including participant debriefing, member checking, and fair compensation, underscored the commitment to respectful and inclusive research practices.

The research team employed inductive reflexive thematic analysis in the analysis phase, integrating participatory elements through member checking. Participants actively contributed to interpreting their interview transcripts, ensuring the findings authentically reflected their experiences. This participatory approach enriched the research process and amplified the voices of Autistic working mothers, fostering a sense of ownership and empowerment within the study.

This study has been published.

Publication summary

Autism in Adulthood article