Impact stories
We make measurable, demonstrable and beneficial change occurring beyond OTARC's research. The following impact stories will detail our research's substantial and positive changes to the Autistic and autism communities in 2023.
THE VICTORIAN EARLY ASSESSMENT CLINIC (VEAC)
In preparation for the launch of the VEAC in October of 2023, we created jobs, trained staff in a neurodiversity-affirming care model and trained clinicians in autism diagnosis. In the first 24 clinic days, we started 20 families on their assessment journey.
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 Professor Cheryl Dissanayake AM to testify at a public hearing. 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, OTARC was 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 Professor Dissanayake AM informed the Victorian Autism Plan's action, 2.1. Improve access to autism assessment, diagnosis, and early intervention.
OTARC 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.
And in just 24 clinic days:
- 20 families commenced their assessment journey
- 11 families completed the assessment process (including a feedback session
- 6 families have received a comprehensive report and a personalised pathways plan to facilitate informed decision making for next steps.
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
SUICIDE PREVENTION AND R U OK?
In 2023, the Suicide Response Project was adapted and integrated into the R U OK? Website, expanding the reach and accessibility. Since its launch, the page has been viewed 33,000 times, and social media posts have been viewed 100,000 times.
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 innovative platform offers a wealth of resources, comprising 12 comprehensive modules, animated videos, and downloadable fact sheets. The website provides evidence-based strategies to empower individuals to intervene when someone is at risk of suicide effectively. Specifically tailored to address the unique challenges faced by Autistic and LGBTIQA+ communities, the material offers knowledge-building resources and practical intervention techniques.
Suicide Prevention Australia (Suicide Prevention Australia National Suicide Prevention Research Fellowship awarded to A/Prof Darren Hedley), Untapped, La Trobe University, OTARC, The Australian Research Centre in Sex, Health and Society (ARCSHS), AMAZE, ASPECT, Different Journeys, Healthy Autistic Life Lab (HALL), and the Emotions Clinic, Australia supported this project.
The impact of these resources was further amplified in 2023 when they were adapted and integrated into the R U OK? website, expanding their reach and accessibility. 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.
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
ASDetect
ASDetect is the world’s first empirically-based mobile application for the early identification of autism. In 2023, we released a version in Slovak available to approximately five million native speakers.
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.
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 2023:
- we released a Slovak version and the app
- the app has been downloaded 24,429 times.
United Nations Sustainability Goals
Contact otarc@latrobe.edu.au for more information about this project.
ASDetect website Identification and diagnosis program website
FitSkills
In 2023, we partnered with Down Syndrome Victoria (DSV) to develop FitSkills, an evidence-based 12-week community exercise program developed to address the needs of young people with disability aged 13 to 30 years. The pilot was received positively and is offered by DSV in 2024 as a service recognised under the NDIS.
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.
INCLUSIVE CARE SYSTEMS AND POLICY GUIDANCE
In 2023, the World Health Organization and the United Nations Children's Fund released their Global Report, 'Children with Developmental Disabilities: from the Margins to the Mainstream,' referencing our research. 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.
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, 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). In 2019, 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."
- Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., Carr, T., de Vries, P. J., Dissanayake, C., … McCauley, J. B. (2022). The Lancet Commission on the future of care and clinical research in autism. Lancet (London, England), 399(10321), 271–334.
- Woolfenden, S., Eapen, V., Jalaludin, B., Hayen, A., Kemp, L., Dissanayake, C., ... & ‘Watch Me Grow’ study group (2016). 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. BMJ open, 6(9), e012144.
United Nations Sustainability Goals
IMPROVING CLINICAL DECISION MAKING
In 2023, the Finnish Medical Society and the Serbian Ministry of Health released national guidelines on Autism Spectrum Disorder, incorporating our research into clinical guidance to empower healthcare professionals and improve outcomes for Autistic people.
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, 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".
- Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., Carr, T., de Vries, P. J., Dissanayake, C., … McCauley, J. B. (2022). The Lancet Commission on the future of care and clinical research in autism. Lancet (London, England), 399(10321), 271–334.
United Nations Sustainability Goals
Serbian Ministry of Health Autism Spectrum Screening Guidelines
Autistic people face significant challenges entering the workforce.
In 2017, OTARC researchers and colleagues undertook a systematic review 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”.
- Hedley, D., Uljarević, M., Cameron, L., Halder, S., Richdale, A., & Dissanayake, C. (2017). Employment programmes and interventions targeting adults with autism spectrum disorder: A systematic review of the literature. Autism.
United Nations Sustainability Goals
ACCEPTANCE AND COMMITMENT THERAPY FOR INSOMNIA - SLEAPI
OTARC, collaborating with ACTUALISE Lab, co-developed a new approach to supporting Autistic people experiencing poor sleep - SLEAPI. We evaluated SLEAPI, finding that 75% of participants had clinical improvement in insomnia symptoms post-intervention and 63% had clinical improvement in insomnia symptoms at 2 month follow-up.
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.
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.
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