I am delighted to introduce the Olga Tennison Autism Research Centre (OTARC) 2024 Impact Report, which highlights another year of significant research translation by a Centre that is deeply committed to contributing to improved wellbeing in the community.

OTARC delivers programs that directly support Autistic people and their families. It exemplifies the University’s mission to do world class research with real world impact. The Centre’s work is the primary reason that La Trobe was rated as Australia’s leading institution for research on Developmental Disabilities by The Australian Research Magazine for a fourth consecutive year in 2024.

During 2024, OTARC delivered a year of impressive projects to support identification and diagnosis, supports and practices for daily living, educational and vocational engagement, and health and wellbeing for Autistic people. This included establishing an Autistic PhD scholarship program supporting research that is addressing critical gaps in the current healthcare and education sectors, and implementation of inclusive hiring practices to attract more neurodivergent talent to work at the Centre.

OTARC researchers also contributed significantly to policy development in 2024. The Social Attention and Communication Surveillance (SACS) tool developed by OTARC, which is regarded as the most effective autism screening tool in the world, is being widely used across Australia, New Zealand, and beyond and is cited in several national clinical guidelines.

In 2024, the Centre expanded its work to regional Victoria. The Victorian Early Assessment Clinic managed by OTARC, which specialises in providing support for infants and toddlers with a high likelihood of autism, undertook its first regional assessment trip to Bendigo. OTARC also received funding from VicHealth to deliver a project providing fitness professionals with practical advice to improve the gym experience of young adults with disability.

I congratulate OTARC’s staff, supporters, and partners on their achievements during 2024. We all benefit from the Centre’s dedication to advancing research that enriches the lives of Autistic people, their families, and carers.

Professor Theo Farrell

Vice-Chancellor

The Olga Tennison Autism Research Centre aspires to create knowledge to positively impact the lives of Autistic people and their families and carers. The 2024 OTARC Impact Report demonstrates the multiple pathways by which our research enriches Autistic lives.

We are committed to keeping the Autistic voice central to all we do. We engage in co-design and community consultation in research through our Autvisory Committee. Our research program areas: identification and diagnosis, supports and practices for daily living, educational and vocational engagement, and health and wellbeing, reflect the priorities of the Autistic and autism communities for knowledge generation.

We actively contribute to policy that directly impacts Autistic people and their families. In 2024, our researchers were members of the National Autism Strategy Oversight Council, the working group for the National Roadmap for Improving the Health and Mental Health of Autistic People, the Victorian State Autism Plan Advisory Group, and the Victorian Education Departments Autism Education Strategy Advisory Group. The Olga Tennison Autism Research Centre also made submissions to government inquiries that considered the prevalence, causes and impact of loneliness on Autistic people and Autistic women’s pain. Additionally, we prepared a policy brief for Suicide Prevention Australia to highlight Autistic people’s elevated risk of suicide.

Our researchers are actively involved in implementing and assessing the impact of evidence-based supports and strategies on Autistic people in the community. In 2024, our Victorian Early Assessment Clinic provided neurodiversity-affirming diagnostic care for 89 families of young children, setting them on the path for strengths-based approaches to support. We evaluated the effectiveness of autism awareness training for future psychologists in partnership with the La Trobe University Psychology Clinic. We also assessed an adaptation of FitSkills, an innovative peer-supported gym program for disabled people, in partnership with Down Syndrome Victoria.

Knowledge exchange is another impact pathway for our research. In May, we welcomed the International Society for Autism Research (INSAR) annual meeting to Melbourne. The event brought together over 1,200 attendees from 20+ countries for four days of groundbreaking discussions and discoveries in autism research. Our researchers and students showcased their work through panels (8), oral (11), and poster (38) presentations, engaging with global delegates to exchange ideas and insights. In September, over 100 community members attended the Olga Tennison Autism Research Centre’s annual community research showcase, which focussed on our early career researcher work. Attendees highly rated the event for its accessible format and community relevance. We also continue to expand our dissemination of research through traditional research outlets with a 30% increase in journal publications and 35 invited talks, including keynote presentations in 2024.

These are just some examples of the reach, significance and impact of our research in 2024.

Professor Alison Lane

Director, OTARC

In 2024, we provided expert, evidence-based recommendations for three public inquiries and a policy brief:

• Inquiry into the prevalence, causes and impact of loneliness in New South Wales
• Victorian Department of Health inquiry into women’s pain
• Response to the draft National Autism Strategy
• Suicide in autism: Research evidence and policy brief

Additionally, we were honoured to host Parliamentary Secretary for Disability, Iwan Walters MP, at La Trobe University’s Bundoora campus for a tour of the Victorian Early Assessment Clinic (VEAC). Following the tour, a meeting with our leadership highlighted VEAC’s success, the importance of neurodiversity-affirming support for Autistic children and their families, and our future aspirations.

L-R: Professor Monica Thielking, Professor Alison Lane, Emeritus Professor Cheryl Dissanayake AM, Parliamentary Secretary Iwan Walters MP, Professor Robert Pike, Associate Professor Josephine Barbaro.

OTARC's contributions to policy website

• Emeritus, La Trobe University, Professor Cheryl Dissanayake AM (above left)
• Emeritus, La Trobe University, Professor Amanda Richdale (above right)
• Developmental Disabilities Field Leader, The Australian, Professor Cheryl Dissanayake AM (Lead institution, La Trobe University)
• Profiled by the American Psychological Association, Associate Professor Josephine Barbaro
• Nancy Millis Medal, La Trobe University, Dr Gemma Davy
• Inclusive research practice award, Autism CRC Awards for Achievement in Autism Research, E-QoL-ity: Enhancing the quality of life and wellbeing of young Autistic children, Dr Jac den Houting

• Paediatric Capability Framework Development, expert Advisory Group member, Occupational Therapy Australia, Professor Alison Lane
• Australian Advisory Board on Autism, Director, Professor Alison Lane
• Autism Education Strategy, Advisory committee member, Victorian Department of Education and Training, Professor Alison Lane
• Victorian State Autism Plan, Advisory Group member, Victorian Department of Families, Fairness and Housing, Professor Alison Lane
• International Society for Autism Research Autistic Researchers Committee, member, Dr Melissa Gilbert
• International Society for Autism Research Early Career Researchers Committee, co-chair andmember, Dr Ifrah Abdullahi
• International Society for Autism Research Membership Committee, member, Dr Patrick Dwyer
• International Society for Autism Research “Research Rapid Rounds”, senior expert,Emeritus Professors Cheryl Dissanayake AM and Amanda Richdale
• Australasian Autism Research Council, member, Dr Patrick Dwyer
• Scientific Advisory Committee, Mental Health Foundation Australia, Emeritus Professor Amanda Richdale
• Research in Autism Spectrum Disorders editorial board, Emeritus Professor Amanda Richdale
• Autism Research editorial board, Emeritus Professor Amanda Richdale
• National Centre of Excellence in Intellectual Disability Health, council member, Professor Nora Shields
• Australasian Society for Autism Research, Vice President (Jan-Dec), Acting President, President (Dec-), Associate Professor Josephine Barbaro
• Australasian Society for Autism Research, executive committee member,Dr Patrick Dwyer
• Oversight Council, National Autism Strategy,member,Associate Professor Josephine Barbaro
• Diagnosis and Supports and Services Working group, National Autism Strategy,member,Associate Professor Josephine Barbaro
• Frontiers in Neurology, associate editor Pediatric Neurology, Associate Professor Josephine Barbaro
• Neurodiversity, editorial board, Associate Professor Josephine Barbaro, Dr Jac den Houting and Dr Patrick Dwyer
• Research Executive, Elected Autistic representative, Australasian Society for Autism, Dr Patrick Dwyer
• Leadership group, AIR-P Network ANSWER,Dr Patrick Dwyer
• Health Roadmap Working Group, National Roadmap to Improve the Health and Mental Health of Autistic People, members, Associate Professor Darren Hedley and Dr Jac den Houting
• Journal of Autism & Developmental Disabilities, editorial board, Associate Professor Darren Hedley
• Autism: International Journal of Research and Practice, editorial board, Associate Professor Darren Hedley
• Frontiers in Education: Special Educational Needs, Review editor, Associate Professor Darren Hedley
• Autism in Adulthood, deputy editor,Associate Professor Darren Hedley; editorial board, Dr Patrick Dwyer
• Advisory Group to the UK Government Suicide Prevention Strategy. Autism Centre for Excellence at Cambridge (ACE), UK Policy Working Group member, Associate Professor Darren Hedley
• Mental Health and Adult Autism Project (MHAAP). Adult Mental Health Program, Monash Health, Steering Committee Member, Associate Professor Darren Hedley
• Suicide Prevention Australia, 2024 Grant Assessment Committee Co-chair, Associate Professor Darren Hedley
• Board of Directors, Australian Association of Psychologists Limited (AAPi), elected, Associate Professor Josephine Barbaro

Health and wellbeing research program website

Supports and practices for daily living research program website

The Social Attention and Communication Surveillance (SACS) Assessment

The SACS method identifies a set of behaviours or 'early signs' that are characteristic of Autistic children from as young as 12 months old. Initially implemented in Victoria's Maternal and Child Health services, more than 15 countries use the SACS method. In 2024, we trained more than 905 professionals and students. SACS training was delivered through group training sessions, reaching a diverse workforce across the Torres Strait and Cape York region, hundreds of professionals in New Zealand, all Tasmanian Maternal and Child Health Nurses, and large groups of specialists in Italy. Additionally, the training was completed by professionals from the Child Development Service in the ACT, Western NSW Local Health District, Perth Children’s Hospital, a South Australian community center, and many others through our online platforms.

Supporting a Neurodiverse Workforce

We designed this specialised workplace training 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. This training course aims to create workplace competency in mental health and Autism. Content is available for executives, supervisors, mentors, co-workers and Autistic employees. DXC Technology and ANZ Bank supported the program's development in partnership with the Olga Tennison Autism Research Centre.

Working with Autistic Clients: A Brief Introductory Autism Awareness Training for Psychologists

This training program was developed in response to a request from the La Trobe University Psychology Clinic and funded by the Olga Tennison Autism Research Centre. The development was led by Research Fellow Dr Simon Bury and supported by Autistic professionals and research assistants. The program, grounded in neurodiversity-affirming practices, aims to bridge critical gaps in mental health care for Autistic people, empowering future psychologists to deliver affirming, effective support tailored to Autistic clients' unique needs.

United Nations Sustainable Development Goals

Professional training website

• OTARC website had >68,000 website views, up 54% from 2023
• published 9 Newsletters - We have 3,650 contacts, achieving an average open rate of 40%, almost 4% above the 2024 Mailchimp benchmark
• 15% increase in OTARC Blog visitors. We had >16,000 visitors to the site. Launched on a new platform in November
• 30 media stories, 3 interviews, and 30 mentions of our peer-reviewed papers in news articles. 2024 media list
• 6,675 total social media followers, up 17% from 2023. We posted a total of 360 times, reaching > 197,000 people and achieving a mean engagement of 8%. We had a 150% increase in Facebook visits in 2024.

We launched our LinkedIn page – 432 followers (Dec 16^th) and Bluesky account in late November @olgatennisonautism.bsky.social - > 200 followers in the first month.

OTARC LinkedIn OTARC Bluesky OTARC Facebook

Social media campaigns

International Women's Day

We paid tribute to some of the leading women of the Olga Tennison Autism Research Centre who have pioneered autism research.

See the visual story

World Sleep Day (March 15)

We partnered with World Sleep Day to write a blog article to summarise the research around sleep and autism - Deciphering the connection: Autism and sleep quality in adults - authored by Emeritus Professor Amanda Richdale and Alex Haschek. We also posted our other sleep resources.

Read the blog post

National Sorry Day (March 26)

We acknowledged National Sorry Day in line with La Trobe University. National Sorry Day remembers and acknowledges the mistreatment of Aboriginal and Torres Strait Islander people who were forcibly removed from their families and is held in Reconciliation Week.

GYM-SPARC

We launched GYM-SPARC, a VicHealth Impact Research Grants Initiative to facilitate inclusion of young adults with disabilities in gyms. We also highlighted GYM-SPARC for International Day of People with Disability.

Visit the GYM-SPARC website

Sensory week (November 11-17)

For the first time, we celebrated Sensory Week by sharing engaging content that drew attention to the critical role sensory experiences play in the lives of Autistic people. Through a blend of insights, research, resources, and Autistic perspectives, we explored key themes to foster understanding and drive positive change. Our Facebook account saw interactions up 555%, a 270% increase in visits to our page and a 100% increase in followers, creating a fantastic impact for our online community.

Read the blog post

We launched the inaugural OTARC PhD for Autistic Scholars in 2024. Both candidates will be commencing part-time; their work aims to address critical gaps in the current healthcare and education sectors.

Rebeka Carter

Topic: Investigating the experiences of Autistic students enrolled in pre-registration nursing programs
Supervised by Associate Professor Jennifer Spoor and Dr Melissa Gilbert
Supports and Practices research program area

Mel Giugni (pictured below)

Topic: Autistic adults' experiences of diagnostic overshadowing in the context of physical health issues
Supervised by Dr Lauren Lawson and Dr Jac Den Houting
Identification and Diagnosis and Health and Wellbeing research program areas

Study with us

On October 9, the Victorian Early Assessment Clinic (VEAC) team embarked on their first regional trip to Bendigo. Over two days, our multidisciplinary team conducted cognitive, motor skills, and play-based assessments in a neurodiversity-affirming environment. The  VEAC team also held an information-sharing session with the City of Greater Bendigo’s Maternal and Child Health team. Families expressed gratitude for accessing these vital services locally, sparing them long and stressful trips to Melbourne.

The Victorian Department of Families, Fairness and Housing funds the ongoing operation of VEAC, including regional visits. With funding from Rotary Australia, two regional families were supported in the cost of their assessments. Practice Manager Kim Galletti highlighted the importance of empowering families with neurodiversity-affirming recommendations and referrals post-assessment.

Victorian Early Assessment Clinic Website

We invite leading international and local scholars to present their research to our researchers, our affiliates and the wider La Trobe community. The seminars cover a wide range of topics, including inclusion for adults with cerebral palsy, human rights for people with cognitive disabilities, autism-related topics such as self-harm assessment, early literacy support, and emergency department interactions, as well as broader community perspectives on neurodivergence and early identification pathways.

Speakers: DrGeorgia McKenzie, Dr Piers Gooding, Dr Jessica Revill, Victoria Newell, Emeritus Professor Cheryl Dissanayake AM, Dr Ben Bailey, Dr Hannah Waddington, Dr Nancy Sadka, and Dr Cathy Bent.

We would like to acknowledge the generosity of our speakers and the audience for participating in the Olga Tennison Autism Research Centre Seminar Series.

The seminar videos are hosted on Vimeo and publicly available.

OTARC Seminar Series 2024 showcase

Community events

*40 years in autism research – Professor Cheryl Dissanayake AM farewell

On June 28th, we celebrated the remarkable career of Professor Cheryl Dissanayake AM (pictured below), founding Director of the Olga Tennison Autism Research Centre and the inaugural Olga Tennison Endowed Chair of Autism Research. Over 100 colleagues and friends gathered to reflect on her incredible contributions to autism research and advocacy.

The event featured a seminar by Cheryl titled "40 Years in Autism Research," where she shared her insights on the transformative changes in the field over four decades. Formal speeches followed, with heartfelt tributes from the Vice Chancellor, Provost, and Dean of Psychology and Public Health at La Trobe University.

Cheryl’s leadership and vision have left an indelible mark on the Olga Tennison Autism Research Centre and the broader autism research community. Cheryl’s legacy will forever be a cornerstone of our work.

Watch Cheryl’s seminar on Vimeo

*Research showcase

Our annual research showcase brought together 100 attendees, including researchers, clinicians, government representatives, and Autistic people. Presentations explored topics such as Autistic students’ educational experiences, mental health strategies for parents, and sound intolerance in autism.

The event prioritised neuroinclusivity with adjusted lighting, communication stickers, and sensory-friendly breaks. Attendees praised the accessible environment, with one sharing:

“Seeing others use fidgets gave me the courage to not be self-conscious.”

Watch the Research Showcase talks

*La Trobe University Pride 2024

We joined in on La Trobe University's Pride Week festivities on 29th August to show our support and allyship with the LGBTQI+ community.

Associate Professor Jennifer Spoor and Dr Melissa Gilbert

*Understanding and supporting Autism diets

La Trobe University’s Albury-Wodonga campus hosted an engaging community event on supporting Autism diets, attracting around 60 attendees, including early childhood educators, allied health professionals, and parents of Autistic children.

The expert panel featured Dr Brittany St John, our Visiting Fulbright Scholar, local dietitian Gabby Hope, and behaviour support specialist Bec Hogea, with facilitation by OTARC Communications Manager Melinda Denham.

Discussions ranged from understanding nutritional deficiencies to navigating feeding challenges with health professionals and practical strategies for encouraging children to explore new foods. Dr Brittany St John shared valuable insights on how parents can interpret their child’s reactions during food exposure, exploring the different stages—from simply being near a new food to trying it.

The event offered participants actionable advice and fostered meaningful conversations about addressing dietary challenges in a supportive and inclusive way.

Listen here

L-R: Brittany St John, Melinda Denham & Gabby Hope at the event in Albury-Wadonga.

*International Society for Autism Research (INSAR)

We welcomed the International Society for Autism Research (INSAR) annual meeting to the Southern Hemisphere for the first time. The event brought together over 1,200 attendees from more than 20 countries for four days of groundbreaking discussions and discoveries in autism research.

From clinical, cognitive, and behavioural insights to neurological and social perspectives, the conference offered an impressive breadth of topics. Highlights included discussions on the therapeutic potential of cannabinoids, supporting aging Autistic populations, and fostering sexual wellbeing in Autistic adults. The inclusion of a sensory break room offered a quiet reprieve for attendees, especially those with sensory sensitivities or misophonia.

Our researchers showcased their work through oral and poster presentations, engaging with global delegates to exchange ideas and insights.

"It was fantastic to see more research in areas that are a priority for Autistic adults, including issues around higher education. While there was more evidence of co-production and neuro-affirming language, there's still a way to go in these areas," said Olga Tennison Autism Research Centre PhD scholar Lyndel Kennedy.

The event was a testament to our commitment to shaping the future of autism research and ensuring that the voices of Autistic people remain at the heart of the conversation.

Read our blog post

Student events

*School of Psychology and Public Health Higher Degree by Research Conference

OTARC PhD scholar Lyndel Kennedy was a member of the organising committee for this event for Research students. The dynamic agenda for this free event in June featured expert panels, research presentations, and interactive sessions, with contributions from Olga Tennison Autism Research Centre PhD scholars Clare Kermond, Gemma Davy, Melanie Muniandy, and Robyn Ball. Day 1 focused on professional development, with sessions on managing rejection and exploring post-PhD career paths, accompanied by networking opportunities like "Thesis Speed Dating." Day 2 emphasized research and practical skills, offering panels on project management and engaging with media, alongside research presentations.

Dr Melissa Gilbert, an Autistic and ADHD Teaching and Research Fellow, coordinated the Autism specific subject offered by La Trobe University in semester two. This subject is available as an elective for undergraduate students across all courses at the university. Guest lectures were delivered by Olga Tennison Autism Research Centre lecturers – Dr Ifrah Abdullahi, Dr Daryll Archibald, Dr Simon Bury, Dr Jac den Houting, Dr Patrick Dwyer, Dr Melissa Gilbert, Dr Kelsey Philpott-Robinson, Dr Nancy Sadka, and Dr Nora Shields.

The subject includes scientific, applied, and lived experience perspectives to help students understand Autism. Students explore the changing views on Autism from its first proposed accounts to contemporary understanding. They learn about the early signs, core features, diagnostic tools, and various supports for different needs and life stages. The course highlights different presentations of Autism, Autistic people’s lived experiences, and the support needs of Autistic people and their families across the lifespan. Students also explore attitudes and perspectives on Autism locally within Victoria, Australia, and abroad, including community perspectives, media representation, and government policy. The course helps students develop essential skills for critically evaluating the wealth of information on Autism in the public domain. 38% of lectures were delivered by lecturers with lived experience of neurodivergence.

400 students completed the course, including Bundoora (214), online (166), and Bendigo (21). The students were from multiple degrees: Psychological science, health sciences, education, biological science, biomedical science, science, biomedicine, food and nutrition, teacher education, arts, commerce and health sciences, animal and veterinary bioscience, business, computer science, cybersecurity, languages and linguistics, and outdoor and sustainability education.

We received generally positive feedback from our students this year, with many praising the sessions as interesting, engaging, and highly informative. Our overall satisfaction score rose to an impressive 4.15/5, up from 4.05 in 2023

PSY3ASD student handbook

• 73 peer-reviewed articles
• 82 conference presentations
• >35 Keynotes, invited talks and workshops
• 1.55 field weighted citation impact (where 1 is average)
• 1367 Almetric mentions.

*Metrics collected in February 2025 from Web of Science, SciVal and Altmetric.

Dr Gemma Davy (Pictured below)

Participation and Quality of Life in Caregivers of School-Aged Autistic Children

Supervised by Emeritus Professor Cheryl Dissanayake AM, Associate Professor Josephine Barbaro and Dr Katy Unwin. Awarded the Nancy Millis medal.

"[Thank you] to my incredible supervision team, for their unwavering support, patience, and encouragement over the course of my candidature. I would also like to express my gratitude to Dr Rachel Jellett for her guidance in planning this research topic during my first year."

Dr Beth Radulski 

#TakeTheMaskOff: Autistic Performativity and the Neurodiversity Movement

Supervised by Associate Professor Katie Wright (Department of Social Inquiry) and Emeritus Professor Cheryl Dissanayake AM

Dr Asmita Mudholkar

Feeding Difficulties in young children with a high likelihood of autism

Supervised by Professor Alison Lane.

Dr Georgia McKenzie

Understanding factors influencing participation in community gym settings for young adults with cerebral palsy

Supervised by Professor Nora Shields, Dr Claire Willis, and Dr Rachel Kennedy. One examiner commented:

“The candidate demonstrates mastery of the substantial and critical evidence/data to support this line of research including original contributions to the field. The candidate exhibits the necessary skills to conduct a rigorous critical appraisal of the relevant research evidence. She integrates, interprets and moves the field forward with the dissertation outcomes. The design of each study illustrates the ability to use sound methodological techniques to conduct the studies. The writing is clear, concise and reflects the tone and rigor of research in the field.”

Honours

1. Erin Salmon (Sylvia Walton scholarship recipient) - Investigating the age, and way, in which an autism diagnosis is communicated to children and its effects on the child and family unit. Supervised by Associate Professor Josephine Barbaro and Dr Gemma Davy.
2. Muzna Dakani - The association between monotropism and sensory hyper- and hypo-sensitivity in Autistic adults. Supervised by Dr Patrick Dwyer and Dr Katy Unwin.
3. Lubna Faris - The associations between sensory experience, anxiety, and perceived control in Autistic adults. Supervised by Dr Patrick Dwyer and Dr Katy Unwin.
4. Dominic Phillips - The experience of stigma on language preferences of a neurodivergent cohort: the mediating role of social identity. Supervised by Dr Simon Bury and Dr Rebecca Flower.
5. Chantelle Millar - Disclosure of autism identity in the workplace. Does the timing and amount of information change employers perceptions of Autistic individuals? Supervised by Dr Simon Bury and Dr Rebecca Flower.
6. Hannah Chadwick - The relationships between sleep quality, fatigue and psychological flexibility/inflexibility. Supervised by Emeritus Professor Amanda Richdale and Dr Lauren Lawson.
7. Katrina Alford - Participation in physical activity among Autistic adolescents and young adults. Supervised by Professor Nora Shields and Dr Rachel Kennedy.

Stidy with us

Dr Brittany St . John is an occupational therapist, a Fulbright Postdoctoral Scholar and Honorary fellow at the Olga Tennison Autism Research Centre in 2023, extended into 2024. 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 a community talk in Albury-Wadonga.

Listen here 

Professor Brian Boyd is the William C. Friday Distinguished Professor of Education, University of North Carolina, Chapel Hill and sits on the Olga Tennison Autism Research Centre 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.

Victoria Newell is an ESRC-funded PhD scholar based at the University of Nottingham, supervised by Dr Sarah Cassidy (University of Nottingham) and Dr Caroline Richards (University of Birmingham). Their PhD research involves developing a self-harm assessment tool with and for Autistic people with and without mild co-occurring intellectual disability. Victoria delivered our May seminar - Autism and self-harm: developing a better assessment tool.

Watch on Vimeo

This project received the 2024 Autism CRC Award for Achievement in Autism Research - Inclusive research practice award. One reviewer noted,

“This project goes beyond the usual consultative model to not only ensure that the research is guided by autistic people, but to centre and involve the voices of autistic children. The project team incorporates a number of universities, professional organisations, and community groups and principles of co-design are strongly embedded.”

The E-QoL-ity project is a multi-institutional research initiative led by Professor Dawn Adams (Griffith University) in partnership with Reframing Autism, Queensland Health, STEPS Group Australia, Giant Steps, University College London, La Trobe University’s Olga Tennison Research Centre (Dr Jac den Houting), and Macquarie University. The project was developed in response to priorities identified by the Autistic and autism communities—specifically, the need for evidence-based supports that focus on quality of life and wellbeing in early childhood. The research team included Autistic, neurodivergent, and neurotypical academics, as well as non-academic representatives from the project’s community partner organisations. Recognising that good Autistic quality of life may look different from typical expectations, the team interviewed Autistic adults, Autistic young people, and parents of Autistic children, investigating what a “good life” might look like for Autistic children.

These insights informed the creation of Bloom, a parent program designed to foster positive wellbeing outcomes.

A key feature of this participatory approach is the integration of Autistic perspectives at every stage. The Bloom program consists of eight weekly sessions, co-delivered by an allied health professional and an Autistic adult to ensure the integration of the Autistic perspective. Parents involved in the program provided feedback before, after, and three months post-completion to gain feedback on group format, delivery and content.

This research represents an essential shift towards community-driven solutions, moving beyond consultation to true collaboration.