Contributions to policy
We take advantage of opportunities to use the latest research from the Centre to inform policy and practice
We provide expert, community-driven advice at organisational, state, national, and international levels to facilitate positive change to policies that impact Autistic people. Our recommendations are grounded in principles of intersectionality, co-production, neurodiversity-affirming research, the social model of disability, and a human rights approach.
2024 INQUIRY INTO THE PREVALENCE, CAUSES AND IMPACT OF LONELINESS IN NEW SOUTH WALES
We welcomed the opportunity to provide a submission. We provided an overview of the research on Autistic people and loneliness. We highlighted the heightened risk of loneliness among Autistic people and its negative impact on their mental and physical health. It emphasises that social isolation and loneliness disproportionately affect Autistic individuals. This is due to challenges like social stigma, discrimination, and fewer support networks. These factors contribute to increased rates of anxiety, depression, and suicidal ideation among Autistic people.
2024 DEPARTMENT OF HEALTH (VICTORIAN GOVERNMENT) INQUIRY INTO WOMEN'S PAIN
We welcomed the opportunity to provide a submission. We provided an overview of the research on Autistic Women's pain who experience higher rates of chronic pain, central sensitivity syndromes, and debilitating dysmenorrhea, contributing to a lower quality of life. Autistic women face significant barriers in accessing appropriate pain diagnosis and treatment due to communication differences, sensory sensitivities, and systemic healthcare challenges. To address this, we recommend developing evidence-based guidelines tailored for Autistic women and girls, incorporating their communication styles, emotional support needs, and sensory accommodations into pain care policies and services.
2023 INQUIRY INTO THE STATE EDUCATION SYSTEM IN VICTORIA
We contributed to a La Trobe University submission, providing 4 of the 11 recommendations to the Legislative Council Legal and Social Issues Committee.
Outcome: The Committee requested further information about Professor Alison Lane’s Alert Program® pilot study for child wellbeing in regional Victoria.
The final report from this inquiry is yet to be released.
2023 Western Australian Inquiry into Support for Autistic Children and Young People in Schools
We welcomed the invitation from the Education and Health Standing Committee to provide a submission to the inquiry into support for Autistic children and young people in schools in Western Australia. The team provided content about:
- autism prevalence
- current support available for Autistic students in WA schools
- what strategies work elsewhere for Autistic students
- initiatives that improve the education experience for Autistic students.
OTARC's final submission [1.5MB]
Outcome: In August of 2023, the Education and Health Standing Committee visited La Trobe University's Children's Centre and met with several of the authors of the submission to discuss our research and how it could be implemented in Western Australia. Our submission is noted in the Committee's final report supporting Recommendations:
1 - "That the Premier provide funding for a comprehensive epidemiological study into the prevalence of autism or autism likelihood in young children in Western Australia".
23 - "That the Premier support the development of a whole-of-government neurodiversity strategy, led and co-designed by autistic and neurodiverse people, that focuses on improving life outcomes for autistic and neurodiverse Western Australians".
2022 Victorian State Election
Victorian autism sector organisations Amaze, Aspergers Victoria, Different Journeys, I CAN Network, OTARC and the Yellow Ladybugs released an election call for all Victorian election candidates to commit to:
- Supports and services for all Autistic Victorians and their families.
- The swift delivery of a revised, Autistic-led and accountable Victorian Autism Plan.
- Autistic-led inclusion across Victorian schools, workplaces, services and communities.
Download the open call [PDF 1MB]
2020 Victorian inquiry into Access to TAFE for Learners with Disability
This submission was led by the SASLA team funded by the Cooperative Research Centre for Living with Autism (Autism CRC). The team provided comment on:
- social and economic benefits of increasing accessibility to Victorian TAFE
- experiences of learners accessing and participating in TAFE programs
- barriers to learning
- what teachers and staff require to make the learning experience better.
OTARC's submission Final Report [PDF 5MB]
2019 Royal Commission into Victoria’s Mental Health System
The purpose of the Commission was to “provide the community with a clear and ambitious set of actions that will change Victoria’s mental health system and enable Victorians to experience their best mental health now and into the future”.
We contributed to two submissions:
- Professor Cheryl Dissanayake AM and Associate Professor Darren Hedley participated in a roundtable with our partners AMAZE. The roundtable resulted in a submission made by AMAZE.
- Professor Amanda Richdale, Alex Haschek and Dr Rebecca Flower, members of SASLA team (Longitudinal Study of Australian School Leavers with Autism) on behalf of the Autism CRC, compiled data from young Autistic adults (15 to 25 years of age) in Victoria to give a snapshot of the prevalence of mental health difficulties this group experiences and how this may be contributing to their employment and study participation.
AMAZE submission [PDF 2.8MB] SASLA submission [PDF 943KB] Final Report
2016 Victorian Inquiry into Services for People with Autism Spectrum Disorder
Professor Cheryl Dissanayake’s AM presentation to the committee outlined our success in early autism detection and the positive outcomes possible with early intervention. This input informed recommendations in the Victorian Autism State Plan.
Outcomes:
- All Victorian children are monitored for early signs of autism using SACS-R as part of their routine health visits; MCH nurses make appropriate referrals for children at high likelihood of an autism diagnosis, enabling earlier access to diagnosis and intervention.
- Provision of affordable and neurodiversity-affirming assessment and differential diagnosis via our Victorian Early Assessment Clinic.
SUICIDE IN AUTISM: RESEARCH EVIDENCE AND POLICY BRIEF
We welcomed the invitation from Suicide Prevention Australia (SPA) to highlight the research we and other experts in the field have undertaken to generate an overarching picture of the heightened risk of suicide for Autistic people, the factors contributing to this risk, and barriers to accessing suicide prevention services encountered by Autistic Australians.
RESPONSE TO THE DRAFT NATIONAL AUTISM STRATEGY
The Government’s commitment to drafting the National Autism Strategy is a substantial and welcome step forward in recognising Autistic people in Australia. It offers the opportunity to support Autistic people to live their lives to the fullest and to rectify those areas where Autistic people are not afforded the same access and opportunities as other Australians.
Our response focused on providing 50 evidence-based, community-driven recommendations. Our researchers, lived experience experts, and formal Autvisory committee feedback informed our recommendations.
We identified opportunities for improvement of the draft Strategy through:
- clarifying how each Commitment will be measured,
- further articulating how change will be realised, and
- defining the initiatives that will be implemented to achieve the proposed targets.
Outcome: Six of our recommendations were adopted in part. Read all the details on our blog.
OTARC's response to the draft National Autism Strategy
2023 Response to the National Disability Insurance Scheme (NDIS) Review Committee's ‘What we have heard’ report
We welcomed the invitation from the NDIS Review Committee to provide a response to the Interim Report - the 'What we have heard' report. Our recommendations are grounded in the social model of disability and a human rights approach, acknowledging the intrinsic right to inclusion and that attitudes, practices, and structures create barriers that hinder individuals from reaching their full potential and enjoying equal rights within society.
We provided 29 recommendations in response to the following questions:
- Why is the NDIS an oasis in a desert?
- What does reasonable and necessary mean?
- Why are there many more children in the NDIS than expected?
- Why aren’t NDIS markets working?
OTARC's NDIS review submission
2021 NDIS proposed Early Childhood Early Intervention Reset
Our embedded research program Supports and Practices for Daily Living within La trobe University's Children's Centre was highly relevant to this submission. Our team offered expert opinion on all terms of reference in the reset.
NDIS consultation paper and recommendations
2021 Feedback on the Productivity Commission Report on Mental Health
We prepared a submission to the Committee after the release of the Final Report in late 2020 referencing:
- autism not mentioned as a co-occurring condition that may impact the practical implementation of their recommendations, including prognosis, response to treatment and provision of services
- gaps in the training of various professionals, including tertiary education staff in providing support to enable student success
front line and healthcare workers in determining suicide risk for Autistic people.
2021 Select Committee on Mental Health and Suicide Prevention
We prepared a submission to the Committee with community partners - The Melbourne Clinic and Mindful. The submission provides evidence-based, community-driven recommendations that will benefit Autistic Australians. This substantial submission made 20 recommendations about:
- mandatory federal reporting of all self-harm and suicide events with a specific question regarding autism status
- including autism as a group of interest in any policy outcome or implementation of the Productivity Commission's Report into Mental Health
- informed service provision for Autistic people
- accommodations and adjustments to usual practice for Autistic people
- specialist service availability, development, and expansion
- education and training of service providers
- research.
Outcome: Professor Amanda Richdale and Associate Professor Darren Hedley from OTARC and representatives from AMAZE participated in a public hearing roundtable to discuss autism, mental health, and suicide prevention. The Final Report specifically references our testimony (3.28, 3.29, 3.31). The result of our submission and testimony (as well as other stakeholders in the autism space) was the inclusion of an autism specific recommendation:
- Recommendation 4 - The Committee recommends that the Australian Government ensure the principle of accessibility is at the forefront of all policy and funding programs for the mental health and suicide prevention sector, with a focus on increased funding for specialist services, such as forensic, perinatal and autism services, to innovate, expand and meet demand.
Comment on the Draft National Preventive Health Strategy 2021-2030
We prepared a response to the Draft strategy regarding sleep not being regarded as a fundamental area of interest for a preventative health strategy. Utilising our research, we pointed out that good sleep quality is scientifically linked to the draft focus areas of the strategy. These are improving access to and the consumption of a healthy diet, increasing physical activity, reducing alcohol and other drug harm, protecting mental health.
2021 NDIS Consultation paper: Interventions for children on the Autism spectrum
We prepared a submission in response to the release of this consultation paper putting forward 16 recommendations covering:
- consultation
- promotion of best practice
- what is "reasonable and necessary"
- supporting parents and carers to exercise choice and control
- conflict of interest.
2020 Comment on the Higher Education Support Amendment (Job-Ready Graduates and Supporting Regional and Remote Students) Bill 2020
When the Education and Employment Legislation Committee opened for submission to comment on the proposed changes to higher education funding, we composed a response detailing the ways the Bill would disadvantage the Autistic community.
Outcome: Special consideration measures were added to the Bill prior to its ratification.
2019 Senate Select Committee on Autism
This committee “focus[ed] its attention on productive and meaningful ways to improve services and support for autistic people in the areas of education, healthcare, employment, housing, justice and rights”.
The breadth of the terms of reference offered us the opportunity to make a substantial submission summarising more than 10 years of autism research.
Further consultation: Professors Dissanayake AM, Lane and Professor Richdale presented at a public hearing in February of 2021.
Outcome: The Final Report was released in March of 2022. Our submission and testimony is mentioned throughout the final report offering support form many of the recommendations.
We are specifically mentioned in Recommendation 38 under the heading Diagnosis:
- a national rollout of the Olga Tennison Autism Research Centre’s training program for maternal and child health nurses to improve early identification of autism
- promoting use of the ASDectect app by parents, health practitioners and educators.
OTARC's submission Hearing transcript Final report [PDF 3348 KB]
2022 Recommendations from the 2021 Australasian Society for Autism Research “Health, Wellbeing and Suicide Prevention in Autism” Conference and Roundtable
An international panel, which included 50 per cent Autistic representation, convened by Australasian Society of Autism Research (ASFAR) has today released its findings for eliminating suicide within the Autistic community.
The panel was convened to develop international guidelines, following the revelation of a new Global Burden of Disease data finding, made at the world-first Mental Wellbeing and Suicide Prevention in Autism conference hosted by La Trobe University’s Olga Tennison Autism Research Centre last year.
Final report [PDF3.31MB] Policy brief [147KB]
2019-2020 Lancet Commission on the Future of Care and Clinical Research in Autism
Professor Cheryl Dissanayake AM participated in this commission of international autism researchers. The group included more than twenty of the world’s leading autism researchers, clinicians and advocates. The aim was to answer the question of what can be done in the next 5 years to address the current needs of Autistic individuals and their families worldwide.
2013 Towards the DSM‐5 Criteria for Autism: Clinical, Cultural, and Research Implications
Our senior researchers discuss the clinical, research, and cultural implications of changes to the diagnostic criteria for autism spectrum disorders in the DSM‐5.
Training of Victorian Maternal and Child Health Nurses
A commitment to training all Victorian Maternal and Child Health Nurses in early autism signs was included in the Final Report (2017) of the Parliamentary Inquiry into Services for People with an autism spectrum disorder. In 2019 we were invited to deliver this training across Victoria, and subsequently trained all (around 2000) nurses state-wide with all infants and young children between 11 – 30 months monitored for the early signs of autism as part of routine care.
Parent training and resources
With funding from the Federal Government’s Helping Children with Autism (HCWA) Initiative, we:
- co-developed the National Early Days workshops together with the Parenting Research Centre. These workshops are offered by the State autism associations, and are designed for parents, grandparents, and families of newly diagnosed Autistic children (0-6 years). The free workshops are delivered face-to-face by trained facilitators around Australia. The topics include: what is autism, managing unexpected behaviour and practical skills for encouraging young children’s social communication and developing their independence
- developed autism-specific evidence-based content for the Raising Children Network (RCN) website. Our staff are frequently invited as experts to review and update relevant content.