The Australian Greens are deeply grateful for the advocacy, submissions, time and expertise contributed to this inquiry by autistic people. We acknowledge that the scrutiny of this committee has at times been confronting, requiring great vulnerability and significant emotional labour. Your continued involvement has allowed for the voices of those with lived experiences to be heard. The Australian Greens also acknowledge the valuable engagement of autistic-led organisations, family members of autistic people and family led advocacy organisations.
The inquiry undertaken by this committee had significant potential. Rarely has the parliament been presented with a chance to engage so deeply with a group within the Australian community whose neurodiversity offers such a profound opportunity for transformative change. The committee also had the opportunity to dedicate itself to centring the lived experience of autistic people and systematically examining the barriers which ableism creates for them. We had the opportunity to listen authentically to the perspectives of parents of autistic children and unpack the complex power dynamics that exist at the intersection of disability rights, the rights of the child, parental rights and the right to self-determination. We had the opportunity to scrutinise foundational assumptions regarding 'normalised' forms of social interaction, the nature of disability and the meaning of accessibility.
It is with genuine sadness that the Australian Greens express the view that the committee did not embrace these opportunities and as a result has produced a report that, while containing some recommendations we support, stops far short of calling for the bold, transformational changes that we believe are needed.
Flawed conceptual basis
This committee should have always prioritised an evidence-informed, human rights-based conception of disability at its centre, which the recommendations and conclusions produced should be aligned with.
Instead, the report has been built through the lens of the medical model of disability, which places the autistic individual at the centre of the problem to be inherently 'fixed'. This model encourages the idea that a disabled person should be cured and that the 'real' issue is the individual rather than the ableist barriers with the society around them. Recommendations that are based on this framework are not sufficient for creating meaningful change for autistic people as they will almost always focus on what is 'wrong' with them, rather than what can be done to improve their access to personalised supports which meet their individualised needs.
Disability should always be viewed as a result of the way that society is organised, rather than by an individual's impairment. The Australian Greens utilise the social model of disability which champions this and encourages the removal of barriers that are preventing disabled people from participating in society on an equivalent basis with those around them. Providing solutions that are centred on these barriers in society is crucial to improving the ability of disabled people to thrive and contribute to their communities in a meaningful, positive and equal manner. The social model acknowledges that ableism exists and constantly enforces the barriers that autistic and neurodiverse people face. When combined with the affirmative model, which embraces disability as an identity, it celebrates the contribution that neurodiverse and autistic people make to society, with an assertion of their right to have that contribution and their humanity recognised separate to that of their families.
The Australian Greens have repeatedly made informed choices about the language used to describe disabled people. In doing so, we have consistently emphasised the significant contribution made by disabled people, autistic people, to their communities. These decisions are crucial to ensuring that no individual in a community feels ostracised, neglected, incorrectly defined, or stereotyped by the policies informing their standards of living. We are concerned about a lack of consideration in this report for the unique lived experiences of those with varying access and support needs. The language pertains to descriptions utilised in the medical model of disability, often describing a shared experience rather than acknowledging the lived realities across the entire autistic community. The implications of this language throughout this report could be highly consequential for perceptions and stigmas of the community. This includes placing individuals on a spectrum as to their level of autism, as often utilised in a medical framework, which implies assumptions about the person and the environment they live in. The Australian Greens support a linguistic approach that does not further stigmatise the autistic community, but rather, that champions the strengths and contributions of this cohort in our society.
Our concern regarding language choices extends to those relating to the best support and decisions for an autistic child. For example, implying that support for families and carers should include respite facilities suggests that the family needs a break from their child, potentially reinforcing the young person's view that they are a burden on their family. Rather, the report should focus on the individual developing skills and recuperation through out of home care and support. Reframing these discussions to focus on the growth and success of the child are essential.
Case Study: Inclusive education
Research has supported inclusive education for decades, while many suggestions in the report may intentionally, or unintentionally, allow for the consideration of a segregated classroom setting. Temporary segregated settings, as mentioned in this report, are also springboards for more permanent settings of this nature and replicate current obstructions to employment that an autistic child will experience throughout their life. By failing to explicitly call for a transition to a fully inclusive mainstream education system, the recommendations leave open the possibility of continued segregated education.
The Australian Greens will lead the transition to a fully inclusive education system by 2030, through investing an initial $10 million over four years to co-design a National Inclusive Education Transition Plan with disabled people, families, disability representative organisations, education experts, teachers, and their unions. The Australian Greens are committed to building inclusive education into tertiary qualifications and giving all pre-service and in-service teachers and principals the opportunity to train, retrain and regularly upskill in inclusive education practices by investing $400 million over four years.
The Australian Greens position on inclusive education for autistic children and disabled people is supported by the Royal Commission into Institutional Responses to Child Sexual Abuse, which identified segregation of children with disabilities as a setting-based factor resulting in an increased risk of abuse of children with disabilities. Further, the UN Committee on the Rights of Persons with Disabilities provides the following useful definition in its general comment on the right to education under Article 24, as practices that must be distinguished from inclusive education:
Exclusion occurs when students are directly or indirectly prevented from or denied access to education in any form.
Segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular or various impairments, in isolation from students without disabilities.
Integration is a process of placing persons with disabilities in existing mainstream educational institutions, as long as the former can adjust to the standardised requirements of such institutions.
The Australian Greens also have concerns about the elevation of 'expert advice' over the lived experience of autistic people. Many experts almost always come from a medical approach, applying clinical or therapeutic approaches without understanding the reasonable adjustments required in a regular classroom. Any adjustments to ensure an inclusive setting should be person centred and agreed with students and families with input from educators and 'experts'. Additionally, a consideration that being surrounded by peers is the key to deconstructing feelings of isolation and limiting the potential for a society of ableism should remain at the forefront of any new arrangements.
There are currently no incentives for the regular schooling system to change their practices in relation to inclusive education, with no oversight mechanisms and punishment for 'gatekeeping'. The Australian Coalition for Inclusive Education Roadmap calls for; a national zero tolerance approach and punitive consequences for gatekeeping practices, insists that families and schools be assisted to have a better understanding of what this is and when it occurs, plus have access to robust, transparent and effective mechanisms to make complaints and have them remedied at a school level, and access to an independent national oversight body/commission if the complaint is not resolved. Schools should also be required to record the number of enrolments they have refused or discouraged and the reasons why. Schools should be accountable for their ratios of disabled students.
Key issues in the report's outline for the construction and role of a National Autism Strategy
The Australian Greens commend that this report has placed the development of a National Autism Strategy as a primary recommendation. However, we have concerns about its design and the consultative process as laid out in this report. Below, we have outlined concerns relating to the strategy as pertaining to this recommendation:
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.
The implied intersection between the needs of the autistic individual and those of the family member
This report is widely based on an assumption that the family of an autistic person knows that person the best and can therefore make the best decisions for them. The outcome of this assumption can be clearly seen in the recommendation that the National Autism Strategy 'be both person- and family-centred'. This conflation of the needs of the family and the needs of the autistic person risks prioritising the rights of the parents at the expense of autistic children and adults, particularly relating to their autonomy in decision making. The access needs and supports required for these groups often are unique and should not be considered inherently aligned.
It is essential that the voices of those with lived experiences are uniquely considered in the development and implementation of a National Autism Strategy. Developed alongside this strategy that focuses on the needs of an autistic individual, should be a separate strategy which targets research, direction and support for family members and carers of autistic people considered closely with, but separate from, the National Autism Strategy. This would not take away from the validity of the experiences of family members but would allow this perspective to be assessed and policy changes recommended in an independent environment that does not overshadow the views of autistic individuals. This separate strategy should support family members to journey alongside autistic members of their family in achieving human rights-based outcomes for the people that they care about.
Co-design process
Whilst the National Autism Strategy should account for the recommendations of this inquiry, its design and implementation should be driven by genuine co-design process, driven by autistic people and their chosen support networks. This co-design process should cover all elements of the strategy and its metrics of success, developing a strategy that is meaningful, meets the needs of the autistic community and can be a successful driver for change.
Recognition of comorbidities
Autism has an extremely high comorbidity rate with other disabilities. In order to adequately respond to this, the National Autism Strategy should be closely integrated with the National Disability Strategy, ensuring that they do not contradict each other and so that the latter has a strong emphasis on addressing barriers for autistic people These strategies should complement each other, rather than work in parallel.
Recommendation
That the Australian Government takes urgent steps to ensure that all policies relating to autistic people:
place the perspective of autistic people at the centre;
are evidence informed and human rights-based;
are informed by the social and affirmative model of disability; and
are aligned with Australia's commitments under the United Nations Convention on the Rights of People with Disabilities.
Recommendation
That the National Autism Strategy:
closely align with the National Disability Strategy to recognise the interaction between autism and other disabilities and mental illnesses;
focus on the autistic community and that a separate strategy is considered which focuses on the families and carers to recognise the individual access needs and support requirements of these two groups; and
is created through a process of co-design with autistic people and those they choose as support people, the Disability Royal Commission and stakeholder groups, with the recognition that its design may or may not align with the recommendations of this report.
Recommendation
That the Australian Government transition to a fully inclusive education system by 2030, through a National Inclusive Education Transition Plan with disabled people, families, disability representative organisations, education experts, teachers, and their unions.
Recommendation
All further research, education and training relating to autistic people should be co-designed and co-delivered by autistic people.
Recommendation
That an easy-read version of the committee's report and this dissenting report be distributed so that it is widely accessible to the autistic community.
Senator Jordon Steele-John
Member