5.1
This chapter explores stakeholder support for a National Autism Strategy, sets out a number of guiding principles that could frame its development, and identifies a range of potential development mechanisms.
5.2
It should be noted that this chapter does not address the content of the national strategy, which will be presented alongside the discussion of key issues in following chapters.
Stakeholder support for a National Autism Strategy
5.3
There was overwhelming stakeholder support for the development of a National Autism Strategy. For some, a cohesive national strategy that set 'clear goals and aspirations to change the quality of life of autistic people' was 'long overdue'. Others highlighted the opportunity it presented to unify people around a 'nationally consistent approach'.
5.4
These views were commonly held, with a National Autism Strategy deemed to be a much-needed mechanism for coordinating service delivery and investment at a national level. As explained by the Australian Autism Alliance (the Autism Alliance), a National Autism Strategy would 'create an intentional and coherent approach to shifting the dial on outcomes for autistic people' by providing an agreed framework to drive 'coordinated and mutually reinforcing policy, research, service, and program responses across different domains and jurisdictions'.
5.5
At the individual level, a National Autism Strategy was seen as a way to address gaps in support for autistic people across the spectrum and throughout their lives, including through key life transitions. As summarised by Mr Paul Micallef, Co-chair of the Autism Alliance:
We could talk about poor education and employment outcomes … poor mental health, social isolation of families, further neglected groups such as women and girls, older autistic adults, our First Nations people and other cultural minorities. But, at the end of the day, we autistic people are experts at falling through the cracks of systems designed to suit the neurotypical majority. So we need a plan—a top-down strategy—that aligns our efforts and ensures that all individual services are designed to actually help us succeed.
5.6
In addition, a National Autism Strategy could also help to incentivise the development of complementary state and territory autism plans. Ms Jenny Karavolos from Autism SA argued this could help bring greater consistency to what is currently a piecemeal approach:
If there were a national autism strategy we'd have a framework and we'd be consistent at a state level. I know there needs to be ownership at a local level but … we're currently reviewing—to support different departments in parallel—25 different disability, action and inclusion plans. They've all got something in them but they are all disparate.
5.7
While support was widespread, some stakeholders stressed that a National Autism Strategy on its own was not enough to create change. This view was shared by other stakeholders who recognised that its success would depend on both its content and the approach taken to implementation. In this context, some viewed the specific delivery mechanism as a secondary issue.
5.8
Other stakeholders were more cautious and questioned whether a strategy targeting one cohort might overwhelm the needs of other groups, or whether a strategy aimed at neurodevelopmental conditions more broadly might be more productive. However, submitters such as Amaze stressed that the 'dire outcomes' for people with autism necessitated 'urgent and dedicated action'.
5.9
Accordingly, and as indicated previously, the majority of stakeholders were strongly in favour of a National Autism Strategy and highlighted its potential to make a meaningful difference to autistic people's lives. This was sentiment was summed up by Mr Benjamin Biro, who described the fears he held for his autistic son and the hope offered by a National Autism Strategy:
The data is stark and harrowing. … That is why I am here today calling for a National Autism Strategy. Having that would signify that the government acknowledges that these outcomes are unacceptable and that the status quo has not worked, and it would commit to a better future, creating hope for autistic people. For me, I just hope to look at my son and think about the promise that his life could bring, rather than living in the fear that no matter what we do he will become just another statistic.
Why a National Autism Strategy?
5.10
Evidence presented to the committee suggests that stakeholder support for a National Autism Strategy is driven by:
the prevalence of autism and the lifelong nature of the condition;
the poor life outcomes experienced by autistic people, even in comparison to other vulnerable groups;
the failure of the current approaches to supporting autistic people; and
the introduction of similar strategies overseas.
5.11
As the prevalence of autism, the lifelong nature of the condition, and life outcomes for autistic people are described in preceding chapters, the remainder of this section focuses on:
the failure of current approaches to supporting autistic people; and
the international experience of autism strategies.
The failure of current approaches
5.12
While some stakeholders acknowledged recent gains in support and resourcing for the disability sector as a whole, including the National Disability Insurance Scheme (NDIS), there was also criticism of the failure of current approaches to improve the lives of autistic people.
5.13
In particular, some submitters pointed to the failure of the National Disability Strategy 2010–2020 (the National Disability Strategy) to drive better outcomes for the autistic community. They also expressed frustration with the siloed and fragmented nature of the support available for autistic people, including the poor integration between the NDIS, other disability supports and mainstream services.
5.14
As dissatisfaction with the NDIS was a significant feature of evidence presented to the committee, issues specific to the NDIS will be addressed separately in Chapter 12.
The National Disability Strategy
5.15
For many stakeholders, the National Disability Strategy was seen as too generic to be an effective mechanism for supporting the autistic community. It was also seen as lacking in both outcome measures and transparency around funding for implementation—aside from funding attached to the NDIS. Further, some stakeholders raised concerns that National Disability Strategy could be reinforcing misconceptions about the nature of autism as its only references to the condition are made in the context of early intervention for children.
5.16
Not all stakeholders agreed. For example, People with Disability Australia (PWDA) suggested that the weakness of the National Disability Strategy was a lack of funding. Accordingly, it recommended greater investment in implementation of the National Disability Strategy, rather than a focus on any one particular cohort of people with disability. PWDA also argued that such a focus would be inconsistent with a social model of disability, which should look at 'barriers to disability in general, rather than focusing on one disability as a "problem" that needs to be solved'.
5.17
However, other stakeholders, such as The Autistic Realm Australia (TARA), did not view a separate autism strategy as incompatible with a social model of disability. Instead, TARA supported a social model of disability as the basis for the plan and recommended that the National Autism Strategy adopt the same 'holistic policy approach' that underpinned the National Disability Strategy.
5.18
Further, the Autism Alliance, argued that it was the ineffectiveness of generic approaches that necessitated more targeted action:
General disability approaches are not working. We look at the data and see what's happening for people with disability and autism. Autistic people are far below even the outcomes of people with disability, which are poor compared to the population.
5.19
Others agreed with this assessment and pointed to the failure of the decade-old National Disability Strategy to make inroads into closing the gap in outcomes for autistic people. This lack of progress was noted by The Sycamore School, which suggested that the broad focus of the National Disability Strategy had allowed 'the particularly poor outcomes of the autistic population' to be overlooked.
5.20
While work to design the new National Disability Strategy 2021–2031 has involved consultation with the autistic community, there is still scepticism about its ability to improve outcomes for autistic people. For example, Autism Aspergers Advocacy Australia (A4) said there was 'no sign' that the new National Disability Strategy would recognise the needs of the autistic community. It also suggested that relying on the new National Disability Strategy to drive change could delay improvements for another decade.
5.21
While unconvinced about the ability of the National Disability Strategy to improve outcomes for autistic Australians, many stakeholders recognised the importance of aligning a potential National Autism Strategy with these broader national strategies.
Fragmented services and support
5.22
Responsibility for delivering funded services and support for autistic people is shared between all Australian governments, the non-government sector, businesses and the wider community. Stakeholders argued that this has resulted in a disjointed approach to policy and program delivery, with 'small, disconnected and fragmented initiatives' delivered through a multitude of systems across different levels of government.
5.23
This fragmented landscape was seen to be 'failing' autistic people, with many autistic people and their carers feeling confused and overwhelmed by 'the complex and multi-jurisdictional system, including NDIS, health, education, justice, housing and employment'. More than one submitter used the expression 'falling through the cracks' to describe the experience of trying to access services and support:
The autism community sits in the middle of the Venn diagram of health, education and disability but rather than get the attention of all three areas of government, it is often lost and mismanaged between the cracks of these departments both at a state and federal level.
5.24
Participants highlighted the challenges this poses for families seeking support. For example, in relation to diagnosis, it was 'not uncommon' for a service in one state to require a new diagnostic assessment for an autistic child who has moved from another state. In some cases, new diagnostic assessments were even required by different service sectors within the same state.
5.25
Stakeholders also observed that the impact of service fragmentation was magnified for vulnerable and disadvantaged autistic cohorts such as Aboriginal and Torres Strait Islander peoples, LGBTQIA and culturally and linguistically diverse (CALD) communities, people in remote areas, those in the child protection and justice systems, and those with multiple and complex needs.
5.26
A more detailed discussion of the issues associated with services and supports for autistic people occurs throughout the rest of this report.
International experience of national autism strategies
5.27
While Victoria is the only Australian state or territory to have a state-wide autism plan, the committee heard that a number of countries have introduced national autism strategies, with some on their second and third iterations.
5.28
Two key strategies mentioned by participants were The Scottish Strategy for Autism and the United Kingdom's National strategy for autistic children, young people and adults: 2021–2026 which was preceded by autism specific legislation.
5.29
The Scottish strategy is a 10-year plan created to ensure national progress in delivering quality services for autistic children and adults, while the United Kingdom (UK) strategy aims to create a society that truly understands and includes autistic people in all aspects of life and provides better access to the services autistic people need throughout their lives. Summaries of these strategies appear at Appendices 3.B and 3.C.
5.30
While not a panacea, it was reported that having a national strategy did bring about positive change. For example, one participant reported that prior to the introduction of autism specific legislation in the UK, 'most areas in England didn't have an adult diagnostic service—now 93 per cent do. Most councils now also have a designated individual who leads on autism services'.
5.31
While acknowledging that the UK strategy has not met all its objectives, it was suggested that a key benefit of the strategy was the greater accountability it imposed on the government, in particular by requiring it to:
develop, review and report on the national strategy; and
produce guidance to inform local implementation of the strategy.
5.32
The importance of accountability in relation to national strategies was also highlighted by other participants. According to the Autism Alliance, public accountability—via strong evaluation and measurement—was identified by Autism Europe as critical to realising the benefits of a national autism strategy.
5.33
As with the UK strategy, national guidance for local implementation was also cited as a feature of the Scottish Autism Strategy. In addition to creating a guide to available support and advice, the Scottish government mapped local autism services to improve coordination. This mapping also 'coincided with significant funding for local authorities and local and national organisations to develop projects, local autism strategies and action plans'.
5.34
Other identified features of successful strategies included:
a commitment to advancing the human rights and inclusion of autistic people (rather than taking a deficit-based approach);
whole-of-life and whole-of-spectrum coverage;
high quality information and training;
links to the broader policy context;
adequate and coordinated funding;
strong accountability mechanisms (including clear targets and measures, an implementation plan, effective governance and timelines for review); and
genuine co-production with the autistic community.
Principles to guide development of a National Autism Strategy
5.35
While there were a range of views about what a National Autism Strategy should look like and what it should contain, the Cooperative Research Centre for Living with Autism (Autism CRC) suggested that its development should be guided by an agreed set of principles. These included that a National Autism Strategy should be:
broad, inclusive and strengths-based;
co-designed with all stakeholders—with autistic individuals and families at the centre of the process; and
underpinned by strong accountability mechanisms.
Broad, inclusive and strengths-based
5.36
It was noted that the diversity of the autism spectrum meant that any National Autism Strategy would have to cater for a broad cohort. For example, one stakeholder argued for a focus on individuals with complex support requirements. Conversely, another participant highlighted the need to support autistic people without profound challenges (but who still require some support and access to opportunities to succeed and live full lives). In addition, there were also calls for a National Autism Strategy to consider the perspectives of service providers and researchers, alongside those of autistic people and their families.
5.37
Given the diversity of the autism spectrum, a number of stakeholders stressed the need for a broad, inclusive and strengths-based National Autism Strategy that 'promotes the participation of people with autism as active citizens in all aspects of society'. For example, TARA called for a National Autism Strategy to recognise the diversity of the autistic community and take a holistic policy approach based on a social model of disability. Similarly, the Autism Behavioural Intervention Association (ABIA) suggested that a National Autism Strategy should:
…recognise the human rights and unique strengths of people with autism, and should strive to create a more inclusive society that provides equal opportunity to individuals with autism.
5.38
Stakeholders also underscored that taking a whole-of-life perspective would help to avoid a singular focus on service provision and ensure that people remain at the centre of a National Autism Strategy. This view was shared by the Autism CRC, which proposed that a National Autism Strategy be both individual and family-centred as well as whole-of-life and whole-of-spectrum focused. A person-centred approach was also seen as important to ensuring that the needs of individuals who have not yet been diagnosed are not overlooked in the development of a National Autism Strategy.
5.39
Within the broad framework of a National Autism Strategy, a number of stakeholders identified a need for targeted action to support particularly vulnerable cohorts. These cohorts, who may face additional challenges and compounding disadvantage, include:
Aboriginal and Torres Strait Islander peoples;
culturally and linguistically diverse communities;
people in regional and remote areas;
individuals in the child protection and justice systems; and
autistic people with multiple and complex needs.
5.40
For example, service provision is currently limited for autistic people living in remote communities, including autistic Aboriginal and Torres Strait Islander people. While support may be accessed by relocating to a regional centre, this separates Aboriginal and Torres Strait Islander peoples from kinship ties, culture and country, which can adversely impact health and wellbeing. Accordingly, a National Autism Strategy may need to include specific considerations for this cohort.
5.41
Similarly, particular considerations may also be needed for autistic people with complex needs as they may not benefit from broader actions to address the needs of autistic people. For example, one participant cautioned that a broad neurodiversity perspective would be inappropriate for autistic people with profound intellectual disability and 'debilitating' co-occurring conditions. At worst, they argued, it could 'put them at very high risk of being misunderstood, left behind, in some cases worse off and inevitably hidden'.
Co-design with all stakeholders
5.42
Consultation and co-design were consistent themes across submissions to the inquiry. The idea of co-design and co-production—not simply consultation—was seen as critical to the acceptance and success of a national strategy. For example, Mr Andrew Davis of the Autism CRC argued that a National Autism Strategy:
…should be developed by all stakeholders in co-production. That is the approach that we've taken with all the things that we've done. That's how you end up with defined needs, a means of conducting work and getting something implemented that is accepted.
5.43
A number of stakeholders emphasised the importance of engaging autistic people in the design of a National Autism Strategy, including autistic children and young people and those from vulnerable or marginalised cohorts. This view was shared by Ms Fiona Sharkie, Co-Chair of the Australian Autism Alliance, who took the view that true engagement happens when autistic people and their families have a seat at the table and are 'actually asked their views about what they need and how they would like their lives to be different'.
5.44
The need to centre the experiences of autistic people was highlighted by stakeholders who were concerned that their perspectives 'are too often regarded as secondary to those presented by medical professionals or non-autistic parents of autistic children'.
5.45
However, other stakeholders highlighted the importance of multiple representations, particularly given the diversity of need across the spectrum, high levels of informal care provision, and the important role played by families and carers. For example, while noting the importance of the autistic voice in developing a National Autism Strategy, Ms Mel Spencer from Different Journeys expressed concerns that 'the carers are getting lost and not being heard and validated, and that's something that needs to be included'.
Strong accountability mechanisms
5.46
The lack of an outcomes framework was identified as a 'fundamental flaw' of the National Disability Strategy.
5.47
This aligned with international experiences, which numerous stakeholders stated underscored the importance of strong accountability mechanisms to the success of a National Autism Strategy. Commonly cited measures included:
a comprehensive, meaningful and measurable outcomes framework;
an implementation plan with clearly defined targets, milestones and responsibilities;
appropriate and transparent funding to support implementation; and
regular monitoring and reporting on outcomes.
Potential development mechanisms
5.48
More than one stakeholder raised the idea of convening a national taskforce (or peak body) to develop a National Autism Strategy and oversee its implementation. For example, Ms Nicole Rogerson from Autism Awareness Australia expressed fears that without such an approach, this inquiry's recommendations would just end up 'on a shelf somewhere'.
5.49
In terms of membership, some stakeholders suggested the taskforce should be chaired by someone with lived experience of autism and should include members of the autism community, as well as leading researchers and clinicians. Others highlighted the importance of including autistic people in a range of key roles covering development, implementation and monitoring.
5.50
It was also recognised that to be successful, a taskforce would need to include people with a proven ability to deliver cross-jurisdictional projects. The development mechanism would also need to facilitate cooperation between different levels of government, as well as intra-government collaboration between departments with responsibility for health, disability, education, justice and social services.
5.51
Given the extent of collaboration and coordination required, the Autism Alliance suggested that the approach taken to the 'refreshed' Closing the Gap Strategy could be used as a possible model for the development of a National Autism Strategy (see Box 5.1).
5.52
Alternative mechanisms identified by the committee could include a dedicated taskforce under the National Federation Reform Council, a working group reporting to the Disability Reform Ministers' Meeting, or a time-limited Ministers' Meeting established specifically to drive development of a National Autism Strategy.
Box 5.1: Closing the Gap in partnership
Established in March 2019, the Closing the Gap Partnership Agreement is a formal agreement between Commonwealth, state and territory governments, the National Coalition of Aboriginal and Torres Strait Islander Peak Organisations, and the Australian Local Government Association.
The Coalition of Peaks comprises over fifty Aboriginal and Torres Strait Islander peak organisations, formed for the purpose of negotiating with governments to develop the National Agreement. The Coalition of Peaks represent the Aboriginal and Torres Strait Islander community-controlled service sector. Members of the Coalition of Peaks are accountable to their communities.
The Closing the Gap Partnership Agreement recognises that shared decision making with Aboriginal and Torres Strait Islander peoples, through their representative organisations, in the design, implementation, monitoring and evaluation of the Closing the Gap framework is essential to closing the gap in life outcomes between Indigenous and non-Indigenous Australians.
Committee view
5.53
The committee strongly believes that all Australians should have the opportunity to fulfil their potential and lead healthy, safe and productive lives. However, this is an opportunity currently denied to many autistic people and their families.
5.54
Despite its prevalence—and the fact that autistic people make up the largest single disability group within the NDIS—autism appears to be poorly understood and not adequately supported.
5.55
During the course of the inquiry, the committee heard first-hand accounts of the devastating impact that a lack of support has on the lives of autistic people and their families. Alarmingly, research shows that these accounts are not isolated incidents. Autistic people continue to experience life outcomes that are worse than both the general population and other disability groups.
5.56
The committee notes that, in addition to the impact on autistic individuals, the failure to provide adequate supports for autistic people also comes at an enormous social and economic cost to families, communities and society as a whole.
5.57
The ongoing failure of the system to improve outcomes for autistic people means that there is little value in continuing to do more of the same. Something must change.
A National Autism Strategy
5.58
The committee agrees with the widely held view that generic disability approaches will not deliver the change needed to improve outcomes for autistic people and their families. This includes the National Disability Strategy—although the committee commends the positive steps taken to ensure consultation with autistic people around design of the new Australia's Disability Strategy 2021–2031.
5.59
The committee also acknowledges the overwhelming support expressed for a National Autism Strategy. Multiple participants highlighted the failure of current approaches and called for an autism-specific strategy that would increase understanding of autism, enhance service coordination and integration, increase the use of evidence-based supports and interventions, and drive a national autism research agenda. In addition, international experience shows that national strategies, while not a panacea, do lead to improved outcomes. Importantly, they serve to establish a baseline against which progress can be measured and reported.
5.60
Accordingly, the committee supports the development of a National Autism Strategy that is both person and family-centred and addresses whole-of-life needs for people across the breadth of the spectrum. To ensure consistency—and to enable its use as a model for future state-based strategies—the National Autism Strategy should align with other national strategies, including the National Disability Strategy.
5.61
The content of the National Autism Strategy, including any priority actions, should be guided by the recommendations of this inquiry.
5.62
The committee recommends that the Australian Government develop a National Autism Strategy and accompanying implementation within 12 months to drive nationally-coordinated action to improve services and supports for autistic Australians. The National Autism Strategy should:
be both person- and family-centred;
address whole-of-life needs for people across the breadth of the spectrum;
align with other national strategies, including the National Disability Strategy; and
be informed by the recommendations of this inquiry and the Disability Royal Commission.
Approach to development
5.63
While recognising that there are diverse views within the autism community on a number of issues, the committee believes a National Autism Strategy has the potential to find common ground and unify the broader autism community around a common set of goals.
5.64
To this end, the committee considers that development of the National Autism Strategy—as well as any associated plans and frameworks—must adopt a co-design approach and that autistic people's voices must be central to this process.
5.65
However, the committee also understands that there are genuine fears some voices could get lost in the development process, including those of parents and carers, as well as autistic people with multiple and complex needs, who may be unable to advocate for themselves. For this reason, the committee believes the co-design process must be inclusive of multiple perspectives.
5.66
The committee also notes that the development process must also include the policy and decisions makers who will be responsible for implementing many of the actions arising from the National Autism Strategy. To this end, the committee believes that utilising the Australian Federal Relations Architecture to drive development would be an appropriate approach.
5.67
The committee recommends that development of a National Autism Strategy be driven by a national taskforce established under the auspices of the National Federation Reform Council. The taskforce should adopt a co-design approach drawing on the autistic community, as well as parents, carers, researchers, and policy makers. The definition of co-design, and the principles underpinning it, should be agreed at the start of the development process.
Accountability
5.68
Evidence presented to the committee about international experiences of autism strategies highlights the link between strong accountability measures and success of a national strategy.
5.69
Therefore, the committee believes that a combination of accountability measures be adopted as part of the National Autism Strategy, including:
clear and measurable actions, targets and milestones;
an implementation plan with clearly defined responsibilities;
ongoing monitoring and reporting requirements; and
built in timelines for review and renewal of the strategy.
5.70
For consistency, and to avoid unnecessary duplication, outcomes and targets developed for the National Autism Strategy should align with those in other national strategies wherever possible.
5.71
The committee recommends that the National Autism Strategy and accompanying implementation plan include an outcomes framework, as well as specific and measurable actions, targets and milestones. Where appropriate, the framework and measurable items should align with those in other national strategies.
5.72
The committee recommends that the taskforce monitor and report annually on the implementation of the National Autism Strategy.
5.73
The committee recommends that an independent review of the National Autism Strategy be undertaken three years after implementation begins, with the findings to be publicly released and used to inform the next iteration of the strategy.