8.1
This chapter provides an overview of the current funding for autism research, as well as discussion of stakeholder views in relation to:
the need for a national autism register; and
the need for a national autism research framework;
Overview
8.2
According to the Department of Social Services, Department of Education, Skills and Employment, and the Department of Health (the departments), funding for autism research at a national level is provided through the Cooperative Research Centre for Living with Autism (Autism CRC), the National Health and Medical Research Council (NHMRC), the Autism Specific Early Learning and Care Centres (ASELCCs), and the Medical Research Future Fund, as well as two initiatives under the national Disability Research Strategy—the National Disability Data Asset and the National Disability Research Partnership. Further detail about these initiatives appears at Appendix 3.D.
8.3
Research funding is also provided at a state and territory level, as well as by non-government organisations, private companies and philanthropic sources.
8.4
However, multiple stakeholders identified a need for increased autism research funding. For example, CliniKids, the Autism CRC and the Australian Autism Alliance (the Autism Alliance) all claimed that autism research currently receives a 'disproportionately' small funding allocation—particularly given the prevalence of the condition within the community and the National Disability Insurance Scheme (NDIS), as well as its lifelong nature.
8.5
CliniKids highlighted analysis showing that during the period 2013–2017, the NHMRC allocated $19.3 million to autism research projects—a 'very small fraction' of the approximately $3 billion in research funding allocated by the NHMRC over the same period. Similarly, Assistance Dogs Australia pointed to a 'significant gap' in NHMRC funding for research into intellectual/cognitive health issues compared to the funding provided for physical health issues.
8.6
This appears to be supported by data provided by the departments. At the time of their submission, the departments noted that the NHMRC had provided around $33.8 million in funding towards autism research since 2010. However, data from the latest NHMRC Annual Report suggests that this amount is dwarfed by expenditure on the nine identified major health issues (see Figure 8.1). Over the last ten years, autism received less than half the funding that asthma (the major health issue with the lowest funding) received in the last five.
Existing research gaps
8.7
There was significant stakeholder consensus around the need for more research into autism. This seems to be supported by the findings of a recent mapping of disability research in Australia conducted under the auspices of the National Disability Research Partnership (NDRP). The NDRP mapping appears to show that autism research makes up a disproportionately small proportion of all disability research in Australia. For example, while autistic people with autism make up 33 per cent of NDIS participants, autism was the subject of only 13.1 per cent of identified research papers and 12.2 per cent of identified research reports. This appears to be the biggest discrepancy among all comparable disability types represented in both the NDIS and the NDRP mapping (see Table 8.1).
Table 8.1: Proportion of NDIS disability types versus proportion of NDRP identified research
|
|
|
|
|
|
Autism
|
33
|
13.1
|
12.2
|
|
Intellectual disability
|
19
|
17
|
8.4
|
|
Acquired brain injury
|
3
|
3.2
|
0.9
|
|
Hearing impairment
|
5
|
2.8
|
0.5
|
|
Visual impairment
|
2
|
1.4
|
3.8
|
|
Spinal cord injury
|
1
|
2.1
|
0.5
|
Source: National Disability Insurance Agency, NDIS Quarterly Report to disability ministers, September 2021, p. 590; National Disability Research Partnership, Mapping disability research in Australia, www.ndrp.org.au/mapping-research (accessed 18 November 2021).
8.8
Against this backdrop of a general deficiency in autism research, stakeholders also identified issues and gaps in relation to:
specific research topics;
the type of research required;
the approach to research; and
the translation of research into practice.
8.9
Stakeholders also raised concerns about the future of the Autism CRC and what will happen to funding for autism research after that time.
Research topics
8.10
Some stakeholders, such as Autism Spectrum Australia (Aspect), noted that, until relatively recently, most funding for autism research was allocated to biological research. However, this began to change in 2013 with the establishment of the Autism CRC which has an investment portfolio that prioritises 'research across the lifespan rather than health and medical research.
8.11
According to the Autism CRC, one study found that between 2008–2012, almost half of the total autism research funding of $14 million 'was allocated to biological research, with no identifiable funding allocated to lifespan issues, infrastructure or surveillance'. Between 2013–2017, the total funding increased to $44 million and included a significant allocation to lifespan issues, infrastructure and surveillance (see Figure 8.2).
8.12
While this change in focus has been welcomed, stakeholders have identified a number of specific areas where there is a need for further research. These include:
research to enhance screening and diagnostic tools (particularly in relation to the diagnosis of autistic females) and to develop tools for assessing functioning and support needs;
research to build the evidence-base around specific interventions, including the relative efficacy of different interventions (including early interventions), methods for identifying which intervention is most appropriate for which individual (and when), and the potential of very early interventions beginning in infancy;
research into vulnerable and disadvantaged cohorts and their experiences of autism, including First Nations communities, culturally and linguistically diverse communities, autistic people that identify as LGBTQIA, and those in the justice system;
research into effective education environments and supports, as well as educational transitions;
research into post-school options, transitions and employment;
research into the needs of autistic adults and effectiveness of services and supports;
research into autism and co-occurring mental health issues and related supports;
research into neurodiverse relationships, sexuality, sexuality support and access to reproductive and sexual healthcare services; and
research into complex needs (including co-occurring intellectual disability) and severe behaviours.
Research types
8.13
In addition to specific research topics, stakeholders identified the importance of supporting particular types of research. For example, La Trobe University's Olga Tennison Autism Research Centre (OTARC) pointed to a lack of large-scale longitudinal studies which are:
…important in assisting us to predict pivotal outcomes for autistic adults and the impact of co-occurring conditions, accessibility to services and adequacy of supports.
8.14
This view was supported by other contributors, such as The Sycamore School and CliniKids, which noted that an understanding of long-term impacts was also vital to making an economic argument for the provision of early intervention services.
8.15
The need to establish the long-term financial impact of different supports was also raised by Irabina Autism Services as a particular issue in relation to autistic individuals with complex needs and behaviours:
…longitudinal studies are required to ascertain the long-term financial impact of … 'treatment as usual' experienced by most individuals with autism presenting with severe behaviours of concern, including but not limited to hospital visits, intensive respite, relinquishment and care by secretary orders. These longitudinal studies should seek to compare … costs of inadequate 'treatment as usual' to those [costs] incurred by individuals who have received recommended intensive behavioural interventions and support aimed at achieving sustained positive changes in their behavioural presentation.
8.16
The Autism CRC also reflected that long-term funding certainty has also been critical to the ability to invest in 'quality research projects' that bring a range of parties together over multiple years to address significant national needs. It argued that 'without such time and resources, the National Guideline for the Assessment and Diagnosis of Autism and the inclusionED education practices platform could not have been delivered'.
Approach to research
8.17
Numerous stakeholders advocated for the use of participatory approaches to autism research that include autistic people as partners in the design and implementation of autism research.
8.18
For example, the Autism CRC argued that co-production leads to better research design and 'more trustworthy conclusions', as well as 'the potential to generate more relevant and appropriate research that is responsive to the needs of people on the spectrum'. In addition, it stated that 'research findings and interventions are more likely to be accessible, useful and sustainable, and more widely disseminated'. To this end, the Autism CRC noted the role of its Sylvia Rodger Academy in developing the capacity of research and autistic adults 'to work as peers in research'.
8.19
Both the Autism CRC and OTARC observed that participatory approaches to research can also contribute to increasing the social inclusion, agency and self-esteem of autistic people and communities.
Translating research into practice
8.20
Both CliniKids and the Scope-University of Melbourne Partnership (Scope-UoM) identified a gap in relation to translating research into clinical practice. For example, the Scope-UoM described the 'systemic uptake of research findings and integration of research evidence into clinical practice' as 'an ongoing challenge in Australia'.
8.21
As a result, CliniKids suggested that, in addition to building an evidence base, the development of 'an independent, authoritative and accessible framework' for the collation and dissemination of knowledge would be beneficial to the research and autism communities.
The Autism CRC
8.22
According to the Autism Alliance, the Autism CRC is:
…essential to linking what could otherwise be a disconnected suite of research projects, adding value to each and ensuring that the knowledge attained through each project is understood and applied nationally.
8.23
As such, some submitters raised concerns about the end of Commonwealth funding for the Autism CRC. For example, Aspect expressed its fear that 'research into services, supports and interventions that have practical and meaningful benefits to autistic people will once again be minimised'. Similarly, the Autism Alliance cautioned that the gains made in understanding autism and autistic people's needs could 'backslide'.
8.24
The Department of Developmental Disability Neuropsychiatry, University of New South Wales (UNSW 3DN) pointed out that that this may make it difficult for researchers to access recurrent funding. This could, in turn, leave them more reliant on short-term funding from state governments, where funding responsibilities are often split between disability and health services. Accordingly, UNSW 3DN suggested that there was a need to 'consider the best ways to support and sustain research in this area,' such as exploring the potential use of the Medical Research Future Fund.
A National Autism Register
8.25
Various stakeholders highlighted the lack of accurate data on autistic people in Australia as a challenge to doing better research. For example, the Commissioner for Children and Young People Western Australia and the Autism CRC both underscored the role inadequate data play in preventing better understanding of the prevalence of autism in Australia. ND Australia shared this view:
Even the 2018 [Australian Bureau of Statistics] snapshot of Autism in Australia was based on an estimation and it acknowledged there were errors in the sampling and that some of the estimates needed to be used with caution.
8.26
According to CliniKids, understanding the prevalence of autism, as well as trends in prevalence over time, 'is critical for planning both broad and targeted policies and services that are effective and responsive to community needs'.
8.27
Accordingly, the Queensland Law Society suggested enhancing the utility of current data collections (such as those held by the NDIS and Centrelink).
8.28
Others proposed that a National Autism Register be developed to better understand the prevalence of autism, as well as to enable research and inform policy development. Both CliniKids and ND Australia suggested that a National Autism Register could be modelled on the Autism Register currently operating in Western Australia (see Box 8.1).
8.29
While Autism Awareness Australia highlighted the need to protect individuals' privacy and one submitter opposed the creation of a national register, the Queensland Law Society noted that:
Researchers in the disability and health sectors have access to well-documented protocols for pseudonymisation and anonymisation of individuals' sensitive information for privacy protection.
Box 8.1: The Western Australian Autism Register (WA Autism Register)
The WA Autism Register is administered by the Telethon Kids Institute. It is the first register of its kind in Australia and has collected information on newly diagnosed cases of autism spectrum conditions in WA since 1999. Some of the uses of the WA Autism Register include:
research (using its own data, and for linking interested families with current projects);
understanding characteristics that are shared across everyone with a diagnosis; and
help in planning for appropriate services, including health, education and disability.
The WA Autism Register has formed the basis of important research advances and provided key data to the first autism prevalence estimate in Australia, which was published in 2008.The WA Autism Register collects simple demographic and diagnostic data for each person receiving a new diagnosis, including:
date of birth, gender, primary language at home;
diagnostic criteria used;
IQ (verbal and non-verbal) and/or developmental abilities;
other cognitive assessments;
comorbidity (the presence of other conditions);
language assessments; and
The data is entered into a web portal by diagnosticians and are stored in encrypted form, with confidentiality and data-security procedures informed by an ethics committee. The information kept on the register is strictly confidential and is only used for the purposes for which it was intended. Any person or organisation requesting information from the WA Autism Register must approach the Advisory Committee. Identifying information, such as names, are not released without consent from a parent or the individual with autism.
8.30
As noted by CliniKids, the WA Autism Register 'has formed the basis of many important research advances'. It also 'provided key data to the first autism prevalence estimate in Australia, published in 2008'. According to CliniKids, prevalence studies since that time have been reliant on broader research or administrative datasets, such as those related to the Longitudinal Study of Australian Children and the Helping Children with Autism program, which are 'suboptimal' for the purpose.
8.31
The Autism CRC emphasised the need to establish links between a National Autism Register and other national datasets, such as those administered by the Australian Institute of Health and Welfare (AIHW), the health system and the NDIS.
8.32
To this end, the AIHW reported that the Commonwealth and governments of New South Wales, Queensland, South Australia, and Victoria are working together to develop a National Disability Data Asset (NDDA) that incorporates datasets from different levels of government. According to the AIHW, the NDDA aims to:
…improve outcomes for people with disability, their families and carers, by sharing de-identified data to better understand the life experiences and outcomes of people with disability in Australia.
8.33
The NDDA is currently in a pilot phase designed to demonstrate the potential of using data to support improved policy development, program design and service delivery for people with disability. The test cases focus on early childhood, justice, education to employment, mental health, and how linked administrative data can support an outcomes framework under the new National Disability Strategy. The value of the NDAA was shared by Professor Julian Trollor, from the University of New South Wales:
This is a rich resource bringing together multi linkages, including people with all sorts of disability types and linking it to other sources of information that would help us understand the health and wellbeing outcomes and other outcomes for those with disabilities. …If we were able to promote that resource and ensure that it is actually developed, that would be a really great help for the autistic community and shine light on gaps and strategies that we may be able to use
8.34
The potential long-term benefits of the NDAA for different users are described in Table 8.2.
Table 8.2: Potential long-term benefits of the National Disability Data Asset for different users
|
People with disability, family members and carers
|
Access better information to understand what supports and services may be right for their needs and situation.
Over time, benefit from supports and services that have been designed for their needs and situation because service providers have access to better evidence about what works.
Use the better supports, services and information to live and work with greater inclusion and opportunity.
|
|
Organisations that serve people with disability
|
Access information to help them deliver better and more suitable supports and services.
Move into areas of unmet demand and growing demand to better serve people with disability.
Access evidence to support positive social and economic changes for people with disability.
|
|
Researchers
|
Access better, more complete data from system-wide and person-centred perspectives.
Access data in in a safe, timely and simple manner – including protecting privacy.
Collaborate with government, the disability community and industry to improve outcomes for people with disability.
|
|
Governments
|
Understand the outcomes of people with disability.
Understand how to better reach and serve vulnerable and less-often-reached groups in the community.
Understand how different supports and services contribute to outcomes for people with disability.
|
A National Autism Research Framework
8.35
Various stakeholders argued for a nationally coordinated approach to autism research and proposed that the National Autism Strategy be used to define a National Autism Research Framework. For example, the Samaritans suggested that:
A research framework should be clearly defined in the National Autism Strategy. It should identify priority areas for research, establish overarching principles and guidelines for all research projects and provide coordination for the distribution of funding.
8.36
In addition, more than one submitter suggested using the work of the Australian Autism Research Council (AARC) as a starting point. The AARC was established under the Autism CRC to determine national priorities for autism research (see Figure 8.3). It includes representatives of the autistic and broader autism communities, as well as service providers, health and education professionals, government program managers and policy makers, and researchers.
8.37
In addition, the Autism Alliance observed that a National Autism Research Framework should complement the National Disability Research Agenda being developed as part of the National Disability Research Partnership.
Committee view
8.38
In the committee's view, funding for autism research appears disproportionately low compared to the prevalence of autism in the community. It is particularly puzzling that autism does not feature more prominently in National Health and Medical Research Council funding given that it is in the top 20 leading causes of non-fatal burden of disease in Australia, as well as being the most common (and fastest growing) disability type in the National Disability Insurance Scheme (NDIS).
8.39
However, the committee realises there will always be constraints on the amount of funding available for research. Therefore, the committee believes a National Autism Research Framework is needed to guide autism research in Australia and maximise the impact of limited funding. The national framework should establish priority research topics, as well as guide an appropriate mix basic and applied research, as well as longitudinal and cross‑sectional studies.
8.40
To this end, the committee notes the significant work done by the Australian Autism Research Council to determine national priorities for autism research in Australia. This work, along with the recommendations in this report, should form the basis of the new research framework. The committee also endorses co‑production of research with the autistic community as a core principle of the framework.
8.41
However, the committee is mindful that the new autism research framework would not exist in a vacuum. There is significant work underway at a national level on general disability research. The National Disability Research Partnership and the National Disability Data Asset pilot are promising initiatives, with the potential to help improve outcomes for people with disability. Consideration should be given to establishing a National Autism Register to allow data linkage across states and between levels of government (including as part of any future implementation of the National Disability Data Asset).
8.42
Efforts should be made to ensure the new National Autism Research Framework aligns with these broader national research initiatives. Conversely, these national research initiatives should also consider establishing autism as a key priority area for research. For example, given concerns about the sustainability of NDIS, governments should consider whether autism should be given greater priority in national research agendas. This could be done by creating autism specific funding streams within existing grants programs.
8.43
The committee recommends that a National Autism Research Framework be agreed under the auspices of the National Autism Strategy. This framework should be:
based, as a starting point, on the research priorities agreed by the Australian Autism Research Council;
informed by the recommendations in this report; and
compatible with the National Disability Research Agenda being developed by the National Disability Research Partnership.
8.44
The committee recommends that the taskforce established to develop the National Autism Strategy investigate options for improving the collection of data about autistic people to better inform research, policy and practice in relation to improving life outcomes for autistic people. This should include:
exploring the feasibility of establishing a National Autism Register;
engaging with the Disability Advisory Council to ensure any proposed activities build on (or are compatible with) the results of the National Disability Data Asset pilots;
engaging with the Disability Advisory Council to ensure that data needs in relation to autistic people are adequately represented in any future National Disability Data Asset; and
identifying any gaps in data collection that will not be met by the National Disability Data Asset.
8.45
The committee recommends that the Australian Government prioritise autism research as part of the National Disability Research Agenda and National Disability Data Asset, given that autism represents the most prevalent (and fastest growing) primary disability type in the NDIS. This should include the creation of separate autism-specific funding streams within existing research grant programs.