Impact stories
We make measurable, demonstrable and beneficial change occurring beyond our research. The following impact stories will detail our research's substantial and positive changes to the Autistic and autism communities.
Neurodiversity-affirming tools and training to support inclusive mental health care
University Research Theme: Healthy people, families and communities
Our research has identified that Autistic people are up to five times more likely to die by suicide than the general population. Despite this, most suicide prevention tools fail to reflect Autistic ways of communicating or experiencing distress, leaving critical gaps in clinical care.
Associate Professor Darren Hedley, Dr Claire Brown, Dr Simon Bury, and their colleagues, published two neurodiversity-affirming, clinical suicide prevention screening and assessment tools, co-designed with Autistic people, to ensure they are relevant, accessible, and effective. Our Autistic and lived experience peers shaped the development of these tools by refining language, clarifying terms, and adapting scales to better reflect Autistic communication and experience.
Impact
Suicide Ideation Attributes Scale – Modified (SIDAS-M) - Screens for suicidal thoughts and behaviour in Autistic and neurodivergent adults.
In Australia, Bendigo Health's Suicide Prevention and Hospital Outreach Post-Suicidal Engagement teams use the SIDAS-M. Clinicians report increased confidence, improved preparedness, and a greater ability to support Autistic individuals during crisis.
Internationally, the tool has been translated into Dutch and adopted into the Flemish Suicide Prevention Strategy, supported by national e-learning modules and professional guidelines:
- Guidelines for healthcare and support professionals (2023, pgs. 34 & 63)
- Guidelines for healthcare providers (2024, pg. 21)
- A national e-learning module that supports guideline implementation in practice.
Suicide Assessment Kit – Modified Interview (SAK-MI) - a professionally administered, clinical interview designed to assess suicide risk in Autistic and other high-risk populations (Video summary).
Internationally, SAK-MI has been translated into Norwegian for use in national suicide prevention efforts and is currently under-review for use in the United Kingdom.
Both tools, including training videos and accompanying resources, will be made freely available on the National Autism Mental Health and Suicide Prevention Resource Hub, launching in February 2026.
As a world first, the hub will also provide free, lived experience-led, neurodiversity-affirming training to mental health professionals, ensuring inclusive, informed care for Autistic and neurodivergent people during moments of crisis.
Supporters
Suicide Prevention Australia, Untapped Holdings, OTARC, Monash Health, Barwon Health, Amaze, Aspect, Healthy Autistic Life Lab
United Nations Sustainability Goals
National Autism Strategy
University Research Theme: Social change and equity, Healthy people, families and communities
In 2025, Australia launched its first National Autism Strategy, a bold framework to ensure Autistic people can thrive across all life stages and support needs. The Olga Tennison Autism Research Centre helped shape this landmark policy. We contributed through:
- Research and knowledge creation (2008-)
- Formal submissions to the Senate Select Committee on Autism (2020) and Draft National Autism Strategy (2024)
- Membership on the Strategy Oversight Committee (Associate professor Josephine Barbaro).
Our recommendations were grounded in evidence and co-designed with Autistic people, informed by our research, national events, advisory committees, and lived experience staff.
Impact
- Acknowledging all Autistic people, including those who are non-speaking, multiply neurodivergent, or have complex needs
- Recognising Autistic people as they age, ensuring support across the lifespan
- Improving how Autistic people are represented through a more inclusive and accurate Statement on Autism
- Investing in advocacy by building the capability and capacity of advocates and advocacy organisations to reduce stigma and influence change
- Grounding the Strategy in evidence, including references to diagnostic age data.
Through sustained advocacy and inclusion, we helped ensure the Strategy reflects Autistic experiences and drives meaningful, lasting change.
National Roadmap to Improve the Health and Mental Health of Autistic People
University Research Theme: Social change and equity, Healthy people, families and communities
In 2025, the Australian Government launched the National Roadmap to Improve the Health and Mental Health of Autistic People (National Roadmap). This co-designed policy sets a clear goal: accessible, safe, and autism-informed healthcare across the country.
The Olga Tennison Autism Research Centre helped make that vision a reality. We brought decades of research, deep community engagement, and lived experience expertise to the table. Our formal submissions (Senate Select Committee on Autism and response to the Draft National Autism Strategy) and membership on Health Roadmap Working Groups (Associate Professor Darren Hedley and Dr Jac den Houting) ensured Autistic voices remained front and centre, backed up by the latest research.
Impact
Our contributions shaped key commitments:
- Workforce training for autism-informed care - developing co-designed autism-specific resources for health and mental health professionals
- Inclusive service environments - making healthcare environments more inclusive, flexible, and person-centred
- Early identification and diagnosis - highlighting the need for improved diagnostic practices and service planning
- Suicide prevention - recognition that “mental health and suicide prevention are integral to good health”
- Best-practice service provision - development and national adoption of best-practice guidelines for working with Autistic people.
The National Roadmap is a turning point that reflects the diversity of Autistic experience and commits to delivering evidence-based, lasting, meaningful change to mental health supports for Autistic Australians.
United Nations Sustainability Goals
University research theme: Social change and equity
We have expanded significantly over the last two years thanks to Olga Tennison AO's generous bequest. As we grew, we recognised the need for inclusive hiring practices to attract neurodivergent talent. Our research shows that traditional hiring methods often exclude Autistic people, contributing to high unemployment rates—not due to a lack of skills or capability, but because of systemic barriers in recruitment.
We committed to removing these barriers to build an equitable and accessible hiring process.
Our neuroinclusive approach:
- Clear inclusion commitment – job ads and position descriptions explicitly state our dedication to neuroinclusive hiring
- Essential criteria - "Lived experience of autism and/or another neurodivergence and/or relevant workplace experience in a neurodiverse workplace would be highly regarded."
- A ‘why work here’ statement – highlighting our mission, workplace benefits, and accommodations
- Interview preparation – questions provided in advance, online options, asking for communication preferences
- Clear communication – recruitment process with timelines, directions, maps, interview panel details
- Neurodivergent representation – aim for a minimum of 50% representation on selection panels
- Interview accommodations – breaks, reduced panel sizes, and relevant questioning.
Impact
- 9% staff turnover (2023–2024) – below the national average (15%)
- increased applicant confidence and trust
- positive workplace feedback on inclusivity.
Sustaining Inclusion: In 2024, we expanded staff wellbeing initiatives, including neuroaffirming coaching and workplace flexibility.
United Nations Sustainability Goals
University research theme: Healthy people, families and communities
Early autism identification enables children to access specialised support and services sooner, maximising developmental opportunities and improving the quality of life for Autistic children and their families. The Social Attention and Communication Surveillance (SACS) tool is the most effective autism screening tool in the world, reliably identifying autism in children as young as 11 months.
In collaboration with Te Herenga Waka—Victoria University of Wellington, we trained over 320 education and healthcare professionals in New Zealand, marking the most extensive SACS implementation in the Southern Hemisphere outside Australia. Led by Associate Professor Josephine Barbaro, the training combined in-person workshops and bespoke online courses, ensuring accessibility across the region. This initiative, conducted alongside Dr Hannah Waddington of Victoria University, reinforced the global significance of the SACS tool in early autism identification.
Impact
- Over 320 professionals trained across New Zealand.
- Strengthening identification, diagnosis, and support pathways for young Autistic children
- Cultural responsiveness – integrating local perspectives, language, and values into a custom-built online learning platform
Global reach – The SACS tool is now implemented in 17 countries, setting a benchmark for best practices.
United Nations Sustainability Goals
Identification and diagnosis research program website SACS website
University research theme: Healthy people, families and communities
One in ten young Australians live with a disability. Despite recognising the benefits of exercise and wanting to participate, many do not attend a gym. Led by Professor Nora Shields, the VicHealth funded GYM-SPARC project, is providing fitness professionals with practical advice to improve the gym experience of young adults with disability.
GYM-SPARC equips gym owners, fitness trainers, and health professionals with eight key social support strategies to create more inclusive fitness environments. This initiative has provided practical resources to foster participation and break down barriers for people with disability.
Impact
We released a range of resources to the public including industry workshops and posters for display around the gym available on the new website. https://www.gym-sparc.com.au/
With over 2,900 website visits from across the world—including Australia, the United States, Singapore, Republic of Korea, Canada, New Zealand, Ireland, Finland, Germany, the United Kingdom, France, and the Netherlands—and more than 120 poster sets delivered to gyms across Victoria, GYM-SPARC has significantly increased awareness and knowledge on supporting young adults with disability in gym settings. GYM-SPARC is breaking down barriers to participation, fostering inclusive environments, and promoting the wellbeing of young people with disability.
United Nations Sustainability Goals
GYM-SPARC website Supports and practices for daily living research program website
University research themes: Healthy people, families and communities; Social change and equity
Neurodivergent children and young people in the United Kingdom (UK) face significant barriers to healthcare access, disparities in education outcomes, increased involvement in the criminal justice system, and lengthy referral waitlists.
In 2019, Emeritus Professor Cheryl Dissanayake AM was (one of 26) invited as a Commissioner on the Lancet Commission on Autism (2019-21), resulting in a landmark paper - The Lancet Commission on the future of care and clinical research in Autism.
Impact
The UK Parliament POST research briefing: Support for Neurodivergent Children and Young People, which informs government policy discussions on multidisciplinary care, system navigation for families, and reducing barriers to timely intervention, referenced this paper.
The research briefing highlights key findings from the Lancet Commission, reinforcing the need for an integrated approach to supporting neurodivergent young people.
United Nations Sustainability Goals
University research themes: Healthy people, families and communities; Social change and equity
Developmental disabilities disproportionately affect children from Indigenous and ethnic minority backgrounds, often leading to higher rates of hospital admissions and challenges in accessing appropriate support.
In 2016, Dr Ifrah Abdullahi received an Australian Government Research Training Program Scholarship, leading to a pivotal 2019 study on hospital admission patterns in Australian children with developmental disabilities, considering maternal country of birth and Indigenous status. Results indicate that children of migrant parents face higher rates of language difficulties, intellectual disabilities, and autism. Knowledge gaps and cultural perceptions of developmental delays often hinder families from seeking and engaging with essential support programs.
Impact
The findings from this study have directly informed the Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Guidelines for Aotearoa New Zealand, published by Health New Zealand. These guidelines provide essential recommendations for clinicians assessing and diagnosing FASD within the health system in New Zealand. Including the valuable insights from this research in New Zealand Health’s guidelines will ensure clinicians consider culture, migration, and Indigenous status when making decisions and recommendations to families.
United Nations Sustainability Goals
University research themes: Healthy people, families and communities; Social change and equity
Early identification of autism is crucial for ensuring timely support and improved outcomes for Autistic children and their families. The Social Attention and Communication Surveillance (SACS) tool is the most effective autism screening tool in the world, reliably identifying autism in children as young as 11 months. Based on the SACS, the world’s first empirically-based mobile application for the early identification of autism was developed: ASDetect.
Impact
Three major Australian guidelines reference the SACS as a critical tool for early autism identification.
- The Australian Government references the SACS’s ability to identify Autistic children in the Draft National Autism Strategy (pg 24):
“The average age of diagnosis in children in Australia is about 3-4 years of age, with the most frequent age for diagnosis being 5.9 years. This is despite research showing that identification is possible in infancy (from 0 to 12-months of age), and diagnosis is possible as early as 18-24 months of age.”
- Queensland Health references the SACS in their Chronic Conditions Manual: Prevention and Management of Chronic Conditions in Rural and Remote Australia. 3rd edition in section 2 - Developmental milestones. The Manual recommends the SACS-Revised (SACS-R) for identifying autism and advises that SACS-R results should be shared with any referred multidisciplinary team members for further assessment and support.
- The Centre for Research Excellence in Newborn Medicine, Murdoch Children’s Research Institute published their Guideline for Growth, Health and Developmental Follow-up for Children Born Very Preterm. The guideline includes the SACS and ASDetect as predictive and prognostic tools under the developmental outcome domain of behaviour. The guidelines suggest that clinicians and services consider using SACS based on staff experience and expertise.
United Nations Sustainability Goals
Identification and diagnosis research program website SACS website
University research theme: Healthy people, families and communities
In 2019, Dr Simon Bury and colleagues published the paper Against the odds: Hope as an antecedent of support for climate change action, detailing two studies that show that hope drives support for climate action when success seems possible but not probable. Highly invested individuals reported support for climate change action even at low odds of success, suggesting that hope uniquely motivates action against the odds.
Impact
In 2024, the Community Resilience Working Group (CRWG), Maine USA, proposed updates to the Maine Won’t Wait (MWW) policy in their WG Resilience - Final Recommendations June 2024 report. This document incorporates findings from Bury et al. (2019) by prioritising mental health resilience, climate communication, and equity in climate adaptation. It proposes creating a Climate Psychology Task Force, integrating mental health support into disaster response, and expanding climate education on psychological resilience, especially for youth and vulnerable populations.
United Nations Sustainability Goals
University research theme/s: Healthy people, families and communities; Social change and equity
Less than 3% of Australian children receive an autism diagnosis before two years of age. Our research indicates that an early autism diagnosis (before age 2) significantly improves outcomes. Barriers to diagnosis include lack of training, long waitlists, and high costs.
In 2016, the Victorian Parliamentary Inquiry into Services for People with Autism Spectrum Disorder (2016) invited Emeritus Professor Cheryl Dissanayake AM to testify at a public hearing. Emeritus Professor Dissanayake AM presented research evidence regarding autism in the early years and the impact of this research and related support services on children's lives. Consequently, we were explicitly identified in the final report with Recommendation 3.6 stating – that the Early Assessment Clinic for Autism at La Trobe be re-established. This recommendation and consultation with Emeritus Professor Dissanayake AM informed the Victorian Autism Plan's action, 2.1. Improve access to autism assessment, diagnosis, and early intervention.
We launched the VEAC in October 2023 as part of the Victorian Autism Plan, backed by the Victorian Government.
The clinic's interdisciplinary team, guided by a neurodiversity-affirming practice model and trained by the Clinic's Director, Associate Professor Josephine Barbaro, offers a lower-cost assessment for children under 36 months who are at a high likelihood of being Autistic, making these crucial services more accessible to those who need them most.
Resulting in:
- 7 new jobs created
- 7 staff have received comprehensive training in neurodiversity-affirming practice
- 5 Clinicians have received comprehensive training in the diagnosis of autism.
From 2023-March 2025:
- 150 families engaged with our service
- 141 families proceeded with undertaking full assessment service
- 130 families have completed assessments, including a feedback session
- 109 reports sent
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
University research theme/s: Healthy people, families and communities
La Trobe researchers embarked on a critical initiative alongside individuals with lived experiences from the Autistic and LGBTQIA+ communities to address the alarming rates of suicide within these marginalised groups. Associate Professor Carina Chan and recent PhD graduate Dr Karien Hill (School of Psychology & Public Health), Associate Professor Darren Hedley, Associate Professor Josephine Barbaro and Mick Leahy (OTARC) collaborated with a diverse team of experts, including Associate Professor Mark Stokes (Deakin University) and David Murphy.
Their efforts culminated in developing and launching the Suicide Response Project website (www.suicideresponseproject.com), unveiled at the world first Mental Wellbeing and Suicide Prevention in Autism Conference in 2021, hosted by OTARC. This 8-step programme offers a wealth of resources, comprising comprehensive modules, animated videos, and downloadable fact sheets. It was co-developed with people with lived experiences from the Autistic and LGBTQIA+ communities. The content is tailored to combat myths about how Autistic people may express suicidal thoughts.
The impact of these resources was further amplified by expanding reach and accessibility through:
- the adaptation and integration into the R U OK? website (Views: 44K page, 50K video, 325K R U OK? social media posts)
- a New South Wales Government's Agency for Clinical Innovation resource recommendation on their Neurodivergent People website
- resources translation into Portuguese
- website update in 2025 to be accessible in all languages
This initiative aims to foster a culture of support and understanding through strategic partnerships and collaborative efforts, ultimately saving lives and promoting mental wellbeing within these vulnerable communities.
Supporters
Suicide Prevention Australia, Untapped, The Australian Research Centre in Sex, Health and Society, AMAZE, ASPECT, Different Journeys, Healthy Autistic Life Lab, the Emotions Clinic, Australia.
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
The Suicide Response Project website Health and wellbeing research program
University research theme/s: Healthy people, families and communities; Social change and equity
ASDetect is the world’s first, empirically-based, mobile application for the early identification of autism (based on the Social Attention and Communication Surveillance (SACS) tool). It is freely available in several languages:
- English – 373 million native speakers
- Spanish – 485 million native speakers
- Mandarin – 900 million native speakers
- Slovak - 5 million native speakers
- Polish - ~39 million native speakers.
ASDetect is a video-led mobile app that puts the power in parents' hands, allowing them to select videos that match the social behaviour of their child, from which the app calculates the likelihood (high/low) that their child is Autistic The development of ASDetect was funded by Salesforce, Google, and La Trobe University.
The app empowers parents by producing a social communication profile to discuss with their healthcare provider.
In 2024 the app was downloaded 47,770 times.
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
ASDetect website Identification and diagnosis program website
University research theme/s: Healthy people, families and communities
FitSkills, established by Professor Nora Shields, is an evidence-based 12-week community exercise program developed to address the needs of young people with disability aged 13 to 30 years. The FitSkills program matches a young person with a disability with a volunteer and the pair exercises together at a local gym. A physiotherapist or an exercise physiologist tailored the program, which includes individualised exercise programs with regular check-ins. FitSkills aims to enhance fitness and wellbeing through a supportive and inclusive approach. The program has received funding from the National Health and Medical Research Council and VicHealth and has won awards from VicHealth and the European Academy of Childhood Disability. Down Syndrome Victoria (DSV) partnered in the development of FitSkills. In 2023, they received an Access All Abilities grant (Victorian Government) to run a pilot program, ‘DSV FitSkills’. This program was tailored to suit Down Syndrome Victoria members through consumer consultation with 16 young people with Down syndrome and 16 volunteers who exercised in five community gyms across Melbourne and Bendigo.
The ‘DSV FitSkills’ pilot program was received positively by all involved. Young people with Down syndrome said they would recommend the program to others and wanted ‘DSV FitSkills’ to be offered again in the future. Both the young people with Down syndrome and the volunteers enjoyed the social and fitness benefits of exercising together in the gym. Down Syndrome Victoria has continued to offer DSV FitSkills in 2024 as a service recognised under the NDIS.
- "DSV FitSkills helped me be more out in my community. This is really important to me."
- "...it allows me to keep things off my mind and get out stress by coming to the gym and exercising."
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
University research theme/s: Healthy people, families and communities; Social change and equity
Children with developmental disabilities face challenges such as discrimination, being placed in special care facilities, difficulties in accessing healthcare, and poorer health and education outcomes compared to their peers.
In 2017, funded by the National Health and Medical Research Council (NH&MRC) and in-kind support from University of New South Wales, La Trobe University, SWSLHD and Sydney Children's Hospital Network, Emeritus Professor Cheryl Dissanayake AM collaborated on a paper estimating the prevalence of moderate or high developmental difference on the Parents' Evaluation of Developmental Status (PEDS) - Prevalence and factors associated with parental concerns about development detected by the Parents' Evaluation of Developmental Status (PEDS) at 6-month, 12-month and 18-month well-child checks in a birth cohort.
In 2019, Emeritus Professor Cheryl Dissanayake AM was (one of 26) invited as a Commissioner on the Lancet Commission on Autism (2019-21), resulting in a landmark paper - The Lancet Commission on the future of care and clinical research in autism.
In 2023, the World Health Organization and the United Nations Children's Fund released its Global Report on Children with developmental disabilities: from the Margins to the Mainstream. This report provides principles and approaches to intentionally include the needs and aspirations of children and young people with developmental disabilities in policy, programming and public health monitoring. Our research fellow, Dr Ifrah Abdullahi, contributed to the World Health Organisation-UNICEF report
The report references the Lancet paper multiple times in section 4 of the report - Transforming care systems for Children and young people with developmental disabilities, and the developmental difference paper is used to describe a strengths-based approach:
"The perspective of neurodiversity can stimulate researchers, clinicians and policy-makers to use practices that fully embrace strengths-based
and participatory approaches, address structures of exclusion and promote equality."
United Nations Sustainability Goals
University research theme/s: Healthy people, families and communities
Finnish Medical Society Duodecim Current Care Guidelines
Children with developmental disabilities face challenges such as discrimination, being placed in special care facilities, difficulties in accessing healthcare, and poorer health and education outcomes compared to their peers.
In 2019, Emeritus Professor Cheryl Dissanayake AM was (one of 26) invited as a Commissioner on the Lancet Commission on Autism (2019-21) resulting in a landmark paper - The Lancet Commission on the future of care and clinical research in Autism.
In 2023, the Finnish Medical Society Duodecim released its Current Care Guidelines (Käypä hoito -suositukset): Autism Spectrum Disorder. This national care guideline is intended as a basis for treatment decisions and can be used by physicians, dentists, healthcare professionals and citizens, empowering them with the necessary information to make informed decisions. The guidelines reference this paper in the Etiology and Risk Factors section, stating:
"Neurocognitive theories have been used to explain and understand the symptoms and special features of the autism spectrum. According to the current understanding, these theories explain the special features of the autism spectrum better together than separately".
United Nations Sustainability Goals
Serbian Ministry of Health Autism Spectrum Screening Guidelines
Autistic people face significant challenges entering the workforce.
In 2017, our researchers and colleagues undertook a systematic review - Employment programmes and interventions targeting adults with autism spectrum disorder: A systematic review of the literature - evaluating empirical studies on employment programs, interventions, and outcomes for Autistic adults. The review recommends that future research adopt a multidisciplinary approach, considering the effects of employment on Autistic individuals, their family, co-workers, and employers, as well as how individual differences influence outcomes.
The systematic review has informed the 2023 Serbian Ministry of Health Autism Spectrum Screening Guidelines by providing empirical evidence showing the importance of transition planning :
”there are better outcomes in employment they achieve if services for the provision of services in the transition period are specialized for persons with autism”.
United Nations Sustainability Goals
University research theme/s: Healthy people, families and communities
OTARC, collaborating with ACTUALISE Lab, and with input from three Autistic adults, co-developed an innovative new approach to supporting Autistic people experiencing poor sleep. We evaluated the efficacy of ACT-i, ACT combined with behavioural therapy, to treat insomnia in Autistic adults. Eight Autistic adults took part; they completed questionnaires (before, immediately after, and two months after the therapy), wore activity trackers, and kept sleep diaries. We named the program SLEAPI
The results of our evaluation were promising, showing significant improvements in insomnia and anxiety symptoms following the use of ACT-i. Most participants expressed satisfaction with the program. Building on this success, we have incorporated feedback from our Autistic adult participants to enhance ACT-i, which we have now re-named SLEAPI. Our commitment to improving the lives of Autistic individuals continues, as we are currently engaged in further evaluation of SLEAPI.
- “I found it helpful to be in a supportive environment, one that understands ASD as well as meeting others with similar challenges”
- “Giving us permission not to battle with sleep. Providing strategies to help”
- “Learning not to fight the lack of sleep”
SLEAPI continues to be offered as a group program by the La Trobe Psychology Clinic, at Monash Health and Northern Health, and is being used with both Autistic and non-Autistic clients. Further evaluation is ongoing.
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
SLEAPI peer-reviewed paper Health and wellbeing research program website