The evidence provided over the course of this inquiry provides a compelling case for change. Autistic Australians and their families are often discriminated against and have difficulty accessing the services and supports that they need. Maintaining the status quo is simply not an option.
At the centre of the committee's proposed reform pathway is a National Autism Strategy. This strategy would coordinate efforts to improve life outcomes for autistic people and have clear and measurable goals by which progress could be tracked.
The committee envisages that the national strategy would be complemented by a series of action plans and roadmaps for specific areas—such as health and mental health, advocacy, employment, research, and the service delivery workforce.
The committee thanks all the individuals and organisations that participated in the inquiry and believes that a better future for autistic Australians and their families is achievable with greater understanding and the right policy settings.
Life outcomes for autistic Australians are unacceptably poor. This comes at an enormous personal, social and economic cost.
The headline statistics are stark. Autistic people have a life expectancy more than 20 years shorter than the general population, with more than twice the mortality rate. Autistic people experience high rates of co-occurring mental health conditions and are more likely to attempt or commit suicide than other groups. Seventy-five per cent of autistic people do not complete more than a Year 12 education, while the unemployment rate for autistic people is almost eight times that of people without disability. Autistic people also appear to be overrepresented in the justice system and at higher risk of homelessness than the general population.
Inclusion of autistic people in the community is also poor, with many experiencing loneliness, isolation, exclusion and discrimination. Significant numbers of autistic people report having no friends other than family or paid staff. Likewise, many families say they feel unwelcome at community events, or unable to leave the house due to negative public reactions to their child's autism.
These are not simply statistics on a page. Behind each set of numbers are thousands of autistic children and adults who have been denied the opportunity to fulfil their potential and live healthy, safe and productive lives, as well as scores of families who have been pushed to breaking point.
Meaningful systemic changes would have an enormous impact, with instances of good practice demonstrating how this can be achieved.
During the course of the inquiry, the committee heard first-hand accounts of the devastating impact that inadequate or inappropriate support has on the lives of autistic people and their families.
However, the committee does not believe these problems are insurmountable. Significant inroads could be made by improving service integration and access, increasing understanding of autism in both community and professional settings, encouraging the development of autism-specific and autism-friendly services, and building workforce capacity and capability.
To this end, the committee is encouraged by accounts of appropriately tailored support and good practices that are occurring across a range of sectors. Such actions and initiatives have already made a difference to the lives of some inquiry participants and the autism community more broadly.
Too often, though, access to adequate support appears to be a matter of chance; relying heavily on the knowledge and skill of individual teachers, support workers, and health care professionals who have adjusted their practice to accommodate the needs of autistic students, clients and patients.
While good practice is not yet widespread, the committee is optimistic that a concerted and coordinated effort to address the underlying drivers of poor outcomes will be a catalyst for meaningful and long-lasting systemic change.
The drivers of poor outcomes for autistic people are complex and interrelated.
It is clear to the committee that there is no single cause of the poor outcomes experienced by autistic Australians. While the extent of symptoms and the presence of co-occurring conditions play a role, these can be made worse by external stressors such as poverty, unaccommodating environments, exclusion and discrimination. Among other factors, the committee heard that key drivers of poor outcomes for autistic Australians include:
poor understanding of autism within the community and among service providers;
workforce capacity constraints;
delays in diagnosis and early intervention;
a complex and poorly integrated service environment; and
services that are not designed to meet the needs of autistic people.
Poor understanding of autism within the community and among service providers
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 in Australia.
The committee heard that ignorance of autism within the community, as well as stereotypical views of autistic people, present significant barriers to the social and economic inclusion of autistic people and their families in Australia.
This lack of understanding also extends to providers who deliver services to support autistic people. Concerningly, this includes professionals such as general practitioners, paediatricians, psychiatrists, early childhood educators and school teachers—who are often the first point of contact for parents who are concerned about their child's development. Indeed, the committee received multiple accounts of health professionals who espoused outdated and harmful views about autism and/or refused to take parents' concerns seriously. However, this lack of knowledge does not only affect children. The committee persistently heard that autism is perceived as a childhood condition which results in inadequate support for autistic adults, including difficulties in obtaining a diagnosis later in life.
In addition, the committee heard that the low level of autism understanding in Australia provides a foothold for the spread of misinformation and leaves autistic individuals and their families susceptible to marketed interventions that can be expensive, ineffective and, in some cases, even harmful.
Workforce capacity constraints
As with the broader disability workforce, the inquiry identified a critical shortage of professionals with autism-specific skills, knowledge and understanding. This relates both to deficits in the skills of the existing workforce, as well as shortages of professionals in specific sectors—particularly diagnosis and early intervention—as well as some geographic locations. Together, these challenges contribute to longer service waiting lists, lower quality services and fewer choices for autistic people and their families.
Delays in early identification and family education and support services.
Evidence provided to the committee revealed unacceptably long wait times for autism diagnoses in Australia. Delays in diagnosis can mean children miss out on the opportunity to benefit from appropriate early intervention. This is particularly troubling given the importance of early supports to improving life outcomes for autistic children.
Cost, service availability, and workforce capacity all contribute to current delays in diagnosis. The committee is concerned that, in many cases, the ability to obtain a timely diagnosis appears to be reliant on living within close proximity to a metropolitan centre and/or having the financial means to access private diagnosis services. Cost can be a particular barrier for those seeking a diagnosis later in life as Medicare subsidies for autism diagnosis are not available after 12 years of age.
In addition, while it is unrealistic to expect all health care professionals to be experts in autism, evidence provided to this inquiry suggests that some lack even the most basic understanding of autism. The committee is disturbed by accounts of health care professionals who dismiss parents' concerns, perpetuate misinformation and harmful stereotypes, and promote a 'wait and see' approach to diagnosis.
Evidence also suggests there is a lack of consistency in approaches to diagnosis. The committee heard this is confusing for people seeking a diagnosis and results in diagnostic practices of varying quality. This variability persists despite the release of the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia (the National Guidelines) in 2018.
In relation to early intervention, the inquiry found there is a lack of information about good practice intervention, a shortage of appropriately skilled professionals, as well as long waiting lists for early intervention services. As with diagnosis, the committee is concerned about the impact of socio-economic status and geographical location on the ability of families to access early intervention services.
Complex and poorly integrated service environment
It is clear that autistic people and their families find the current service environment complex and poorly integrated. According to multiple stakeholders, the shared responsibility for delivering funded services and supports—involving all Australian governments, the non-government sector, businesses and the wider community—creates a disjointed approach to policy and program delivery.
As a result, many autistic people and their families feel as though they are engaged in a constant battle to access services, with the outcome often dependent on their resources and capacity to sustain the fight. Also, while the National Disability Insurance Scheme (NDIS) is a critical source of support for many autistic people, engaging with the National Disability Insurance Agency (NDIA) is a significant source of stress. Indeed, the time and effort required to navigate the NDIS has been described as equivalent to a full-time job.
While service delivery within a federation presents challenges, the committee finds the current environment to be unnecessarily fragmented and difficult to navigate. Worryingly, the committee heard this is likely to have a disproportionate effect on already vulnerable cohorts, including:
people from lower socio-economic backgrounds;
people from culturally and linguistically diverse backgrounds;
people in regional and remote locations;
people in the child protection and criminal justice systems; and
people with multiple and complex needs.
Given the high reliance on informal supports for autistic people, the committee is also concerned that navigating the current service environment is placing an undue burden on families and carers.
Services are not designed to meet the needs of autistic people
Currently, there are currently few services designed for autistic people. Instead, the committee heard that autistic people are often forced to make do with generic services, or with services designed for people with other disabilities, neither of which account for the specific sensory and communication challenges facing autistic people.
While many adjustments can be implemented quite easily—for example, reduced sensory stimulation in waiting areas—the committee heard they are not often made. Indeed, the committee heard multiple accounts of service providers ignoring, refusing or ridiculing autistic people's requests for relatively minor adjustments to service environments or processes.
Generic disability strategies have proven ineffective at improving life outcomes for autistic people.
More than a decade after the introduction of the first National Disability Strategy, outcomes for autistic people have not improved.
While acknowledging that the design of the new Australia's Disability Strategy 2021–2031 has involved consultation with the autistic community, the committee agrees with the widely expressed view that generic disability approaches will not deliver the change needed to improve outcomes for autistic people and their families.
A National Autism Strategy should form the centrepiece of efforts to improve outcomes for autistic Australians
The committee heard overwhelming stakeholder support for a National Autism Strategy that establishes a clear roadmap, with specific goals and targets, toward improving the lives of autistic people in Australia.
The committee is also encouraged by international experiences which show 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.
Accordingly, the committee supports the development of a National Autism Strategy to guide comprehensive and coordinated efforts to improve life outcomes for autistic people.
The National Autism Strategy should be person and family-centred, address whole-of-life needs for all autistic people, and include targeted actions to support vulnerable cohorts.
The committee heard that taking a holistic view of the needs of autistic people across their lifetime will help to ensure people remain at the centre of the National Autism Strategy. Likewise, a person-centred (rather than diagnosis-based) approach will mean that the needs of people who have not yet received a diagnosis are not overlooked.
In addition, given the importance of the broader family dynamic to the wellbeing of autistic individuals, the National Autism Strategy should focus on promoting family-centred approaches to the delivery of services and supports.
The committee is also aware that within the broad framework of a National Autism Strategy, targeted action will be needed to support cohorts that face additional challenges and compounding disadvantage.
The National Autism Strategy should be co-designed by the autism community
The inquiry found that the diversity of views within the autism community is linked, at least in part, to the breadth of the spectrum itself. The divergence in views was most apparent between autistic self-advocates and parents of autistic children with more complex presentations, who are heavily or completely reliant on parent or carer advocacy. However, tensions are also apparent within the autistic community itself, with stakeholders describing a lack of acceptance among some autistic advocates for views that do not accord with their own.
To this end, the committee views the National Autism Strategy as an opportunity to identify common ground and unify the broader autism community around a shared set of goals. Accordingly, the committee believes that an inclusive co-design process—drawing on the autistic community, as well as parents, carers, researchers, and policy makers—must underpin development of the strategy.
Accountability will be critical to delivering genuine change
The committee agrees with the view that strong accountability measures will be critical to the success of the National Autism Strategy. Without such measures, the National Autism Strategy risks becoming another aspirational yet ineffective plan for change. Therefore, the committee recommends that the National Autism Strategy adopt a range of accountability mechanisms, 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.
Key priorities for the National Autism Strategy should be guided by the recommendations of this inquiry
Given the breadth of issues addressed by the inquiry, the content of the National Autism Strategy, including any priority actions, should be guided by the full suite of recommendations contained in this report. While not an exhaustive list, some of the key priorities identified by the committee include:
building understanding of autism within key professions and across the wider community;
improving access to early diagnosis and intervention;
improving service integration and coordination;
improving education, employment and health services for autistic people;
supporting parents and carers; and
establishing a national autism research agenda.
Building understanding of autism within key professions and across the wider community
The need to increase autism understanding was raised repeatedly by stakeholders during the inquiry. The committee heard that ignorance of autism within the community, as well as misconceptions about autistic people, are significant barriers to the inclusion of autistic people and their families in the community, at school, as well as in workplaces. Accordingly, the committee sees value in a public education campaign to increase awareness and understanding of autism in the community.
Improving access to early diagnosis and intervention
While the committee acknowledges that autism diagnosis can be a complex process, it is not acceptable that people are waiting years for a diagnosis. The committee believes a maximum timeframe for diagnosis must be established nationally and reported on at least annually. The timeframe should be based on the best practice target of three months.
To improve access to timely diagnosis, the committee makes recommendations aimed at increasing the supply of health care professionals who can diagnose autism and improving the knowledge and skills of the existing workforce. As part of this approach, the committee recommends that action be taken to improve understanding of autism within key professions. The committee also recommends expanding the range of pathways to diagnosis and making changes to the Medicare Benefits Schedule to both encourage take up of the National Guideline and make diagnosis more affordable—particularly for people aged 13 and over who are currently ineligible for diagnosis-related Medicare subsidies.
In relation to early intervention, the committee believes there is a need to continue to build on existing research and to make information and evidence on good practice more widely available to the autistic community and service providers, as well as to government agencies, including the NDIA.
The committee also makes a number of recommendations aimed at more clearly identifying and coordinating post-diagnosis supports. This includes investigating options for a 'one-stop-shop' to help families navigate the pathway from diagnosis to appropriate support services.
Improving service integration and coordination
As a priority, the committee recommends that the National Autism Strategy identify actions to better integrate federal and state service systems. In particular, this should include development of a roadmap to integrate NDIS and mainstream services.
Improving education, employment and health services
Education
The reported experiences of autistic Australians and their families within the education system are deeply troubling. In relation to schools, the committee heard that autistic students and their families contend with gatekeeping practices, inadequate consultation, a lack of appropriate adjustments, high rates of bullying, and the use of restrictive practices in place of proper behavioural support strategies. While the committee also heard evidence of good practices in schools, this appears to be heavily dependent on the skills and experience of individual principals and teachers.
Of these, bullying stands out as a particular issue, with many anti-bullying strategies failing to understand and account for the social and communication challenges that make autistic students especially vulnerable to bullying. The committee believes urgent action is required to reduce bullying of autistic students in schools.
The committee heard diverse and sometimes conflicting views on the type of schools that are best able to meet autistic students' needs—from fully inclusive mainstream settings to autism-specific schools and home-schooling options. It is clear to the committee that one size does not fit all in education and that choice remains an important concept in school education. However, in order to make informed choices, parents and carers need more information about the options available to them and the support that is on offer.
While supporting choice in schooling, the committee also believes that all mainstream schools should work toward becoming inclusive schools, modelled on universal design principles. However, this comes at an additional financial cost that many mainstream schools simply aren't resourced to meet. In addition, most teachers and school leaders are already time-poor and overburdened.
To this end, the committee makes a number of recommendations aimed at improving training for teachers, school leaders and support staff in mainstream schools, including in the use of evidence-based adjustments to assist autistic students. However, the committee also recognises that training alone is not sufficient and that teachers will require additional specialist support if they are to meet the needs of autistic students.
Disappointingly, the committee also heard that the intersection between the NDIS and in-school supports for autistic students remains problematic, despite being a known issue for many years. The committee finds it difficult to attribute this lack of progress to anything other than an absence of genuine resolve to fix the problem. This must now be addressed as a matter of urgency.
Incredibly—given the poor education outcomes of autistic students—there also appears to be no concerted effort by governments to measure whether current funding for students with disability is making a difference to outcomes. While the committee acknowledges the difficulties involved in determining the impact of individual measures on education outcomes, the committee believes that work in this area is long overdue.
In relation to higher education, the committee heard that significant numbers of students do not disclose their diagnosis for fear of discrimination. However, this can mean students are left without support and are exhausted from trying to mask their autism. In turn, this can result in students withdrawing from their studies, as well as suffering potentially long-lasting mental health impacts.
Even when students do disclose their autism, it appears that very few adjustments are made to meet their needs. This may, in part, reflect a lack of pedagogical knowledge and skills among teaching staff, especially in relation to students with disability, including those with autism. As university teaching staff do not require teaching qualifications, the committee recommends that autism understanding should form part of ongoing professional development requirements for teaching staff. This should also apply to staff working in administration and student support roles.
The committee also believes there is a need to better support student transitions into higher education. As the committee learnt, only a very small percentage of autistic students receive adequate transition support. Peer mentoring programs have been identified as one very important source of support but they need to be used more widely.
Employment
Evidence presented to the inquiry highlighted the poor employment outcomes for autistic people in Australia. Among other factors, this largely reflects the failure of the Disability Employment Services (DES) system to support autistic people. The committee heard evidence that the DES system is hampered by a lack of autism expertise, an overreliance on traditional job-seeking mechanisms, and perverse incentives that reward DES providers for the speed of job placements rather than their appropriateness or sustainability. Evidence also suggests that DES providers are failing to provide in-placement support for autistic job-seekers, despite the DES system making provision for this.
Other factors that contribute to poor outcomes include the use of mainstream recruitment and induction processes that are largely inaccessible and ineffective for autistic people, as well as a lack of adjustments for autistic people within the workplace. In addition, while there are some successful autism-specific employment programs, they are predominantly ICT focused and are relatively limited in reach.
Accordingly, the committee recommends development of a National Autism Employment Framework to coordinate and drive measures to improve autistic employment outcomes. Priorities for the framework should include actions to:
improve information for both autistic job seekers and employers;
communicate the benefits of hiring autistic people;
improve education and training for DES providers and employers;
expand both ICT and non-ICT autism-specific employment programs; and
identify ways to support self-employment, further establish governments as employers of choice, and incentivise private sector employment.
In addition, the committee supports calls for a more coordinated approach to education-to-work transition planning that begins well before the end of secondary school.
Health and mental health
As with other sectors, health services are not well prepared to meet the needs of autistic people. The committee heard evidence of poor autism understanding, diagnostic overshadowing, inappropriate treatment approaches, the use of restrictive practices, and a lack of autism-friendly health care environments. In addition, there appears to be a lack of data and evidence that could be used to help monitor and improve health outcomes for autistic people.
Diagnostic overshadowing is a particular concern for autistic people with
co-occurring mental health conditions. The committee heard accounts of autistic people being turned away by both disability and health services because neither service felt equipped to deal with both autism and mental health issues.
Given the complexity of the health care system and the breadth of issues identified over the course of this inquiry, the committee recommends the development of a National Roadmap for Improving Health Services for Autistic People. Priorities for the roadmap should include, but not be limited to:
promoting best practice models of care for autistic people;
aligning Medicare Benefit Schedule items and associated funding with best practice models of care;
ensuring the availability and appropriateness of tools and resources to support diagnosis of comorbidities (including mental health conditions) and the provision of reasonable adjustments for autistic people in health care settings;
building better connections between health care service sectors, including mental health services, disability services and the NDIS;
eliminating restrictive practices in health care settings; and
improving autism education and training for health professionals.
The roadmap should also be accompanied by an associated National Autism Mental Health Plan aimed specifically at improving the treatment of autistic people with
co-occurring mental health conditions.
Supporting parents and carers
Despite the wellbeing of parents and carers being critical to the success of autistic people, there is overwhelming evidence that support for parents and carers is currently inadequate. This includes a lack of respite care and other services that are family-centred and offer wraparound supports. There are also particular concerns in relation to the support available under the NDIS.
Accordingly, the committee believes that the National Autism Strategy should recognise vital role of families, parents and carers play in supporting autistic individuals. The committee also makes recommendations to address gaps in respite services and improve the transparency and consistency of supports provided under the NDIS.
A national autism research agenda
Evidence suggests that funding for autism research is disproportionately low compared to its prevalence and impact in the community. Given this—and in light of concerns about the sustainability of the NDIS—the committee believes governments should consider prioritising autism more highly within national research agendas. This could be done by creating autism specific funding streams within existing grants programs.
However, the committee also recognises there will always be constraints on the amount of funding available for research. As a result, the committee recommends the development of a National Autism Research Framework to guide autism research in Australia and maximise the impact of available funding. The national framework should establish research priorities and ensure an appropriate mix of basic and applied research, as well as longitudinal and cross-sectional studies.
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 autism research framework. Critically, the committee believes co-production of research with the autistic community must be adopted as a core principle of the framework.
In addition, the committee sees significant benefit in establishing a national autism register that would enable data linkage across states and between levels of government. More comprehensive data would improve autism understanding, contribute to the growing evidence base around effective interventions, and help identify and address deficiencies in existing services and supports.
The effectiveness of the National Disability Insurance Scheme for autistic Australians should be the focus of a separate inquiry
Lastly, it is apparent to the committee that the NDIS needs to substantially improve the provision of services and supports that autistic children and adults require. While recognising this is symptomatic of broader problems with the scheme, the committee heard that many NDIA staff and service providers seem to lack even the most basic understanding of autism and the kinds of supports autistic people need. This is particularly troubling given the high number of autistic participants in the NDIS.
However, resolving problems with the NDIS for autistic participants will require a more focused consideration of the issues than was achievable within the broad terms of reference for this inquiry. Accordingly, the committee recommends an inquiry be undertaken by the Joint Standing Committee on the National Disability Insurance Scheme to examine how the NDIS supports autistic participants.