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Submission to the Inquiry of the Senate Select Committee on Autism

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Submission to the Inquiry of the Senate Select Committee on Autism The Autistic Realm Australia (TARA) submission to the inquiry of the Senate Select Committee on Autism July 2020 Emily De Rango, Anna Colbasso, Kylieanne Derwent, Kathy Isaacs, Yolande McNicoll, Stephanie Hook, Narelle McCaffrey www.tara.org.au TARA submission to the Senate Select Committee on Autism Executive Summary The Autistic Realm Australia Inc. (TARA) welcomes the opportunity to provide a submission to the Senate Select Committee on Autism’s inquiry, and would welcome the opportunity to further contribute to the inquiry by giving evidence at a public hearing. TARA is an Autistic-led not for profit association providing support, education and advocacy for Autistic people and the parents and carers of Autistic people in Australia. We are working toward a world where all Autistic people are free to be themselves, and are respected, accepted and empowered to lead meaningful lives of their choosing. Currently in Australia, many Autistic people struggle with discrimination, social isolation, poor mental health and financial precarity. This is because we live in a society where both the general public and health professionals often have limited and inaccurate understandings of Autism, and we are unable to access the support we need to thrive. These challenges are especially great for Autistic girls and women, gender-diverse Autistic people, people who are diagnosed as Autistic as adults, Autistic people from culturally and linguistically diverse backgrounds and Autistic people with complex health needs. Yet despite our challenges and the barriers we face, Autistic Australians have extraordinary strengths and capabilities. To harness these capabilities and create a society where more Autistic people can lead meaningful and satisfying lives, Australian governments, service providers and communities need to recognise the expertise and lived experience of Autistic people. By centring the voices and perspectives of Autistic people, Australia can create policies, programs and services that are appropriate, accessible, inclusive, and celebrate the diversity of the Autistic community. We can create public awareness campaigns that promote understanding of Autism and the Autistic community, and work toward a society that accepts and values all of its members. This submission is founded on the contributions of Autistic Australians and parents of Autistic children, who provided in-depth insights and opinions on the inquiry’s terms of reference via an online survey published by TARA in February and March 2020. It is also informed by TARA’s five years of interaction with the Autistic adults and parents of Autistic children who are members of our support communities. 1 www.tara.org.au TARA submission to the Senate Select Committee on Autism Recommendations All recommendations are premised on a fundamental cultural shift in approaching Autism that values and centres the voices, experiences and expertise of Autistic people, and recognises Autism as a natural and valid form of neurodiversity. 1. Increase acceptance and support for Autism and Autistic people in the community This should include investment in public awareness campaigns to improve the Australian public’s understanding and acceptance of Autism and Autistic people, with a particular focus on developing culturally relevant and accessible information with and for First Nations people and people from culturally and linguistically diverse backgrounds. 2. Develop national media policies on the portrayal of Autistic people Australian governments, Autistic-led organisations and media companies need to work together to develop guidelines that ensure Autistic people are portrayed in respectful ways that recognise their agency, and that portrayals do not fall into sensationalised or stereotypical tropes about Autism. There is a particular need to ensure the informed consent of any Autistic people portrayed in the media, particularly when that person is vulnerable and/or a child. 3. Increase public funding and support for Autistic-led organisations Advocacy related to Autism must be led by Autistic people, with governments supporting and working in partnership with Autistic-led groups to build their capacity for support, education and advocacy and achieve positive outcomes for the Autistic community. To coordinate self- advocacy efforts, public funding and support should be directed toward creating a peak body of Autistic-led organisations that is able to operate as a high-level advisory council for governments and other organisations. Autistic people from diverse backgrounds must be afforded influential positions in all bodies that develop policy and practice guidelines relevant to Autism and Autistic people. All organisations that include Autism services or policy as part of their mission statement must engage in ongoing consultation with an Autistic-led organisation. To support increased social engagement and peer connection, funding should also be directed toward Autistic-led sporting and community programs for Autistic children and adults. 4. Improve the training of healthcare providers, service professionals, decision-makers and educators regarding Autism, related conditions, and the needs of Autistic people Improved training must be created and provided to any practitioner who has any level of involvement with Autistic people; including but not limited to psychologists, psychiatrists, occupational therapists, counsellors, hospital staff, general practitioners and nurses. Practitioners in rural and remote areas must have equitable access to this training, which should be co-designed and delivered by Autistic people and incorporate recognition and celebration of the wide diversity within the Autistic community. 2 www.tara.org.au TARA submission to the Senate Select Committee on Autism 5. Increase access to high-quality affordable diagnostic and support services National diagnostic procedures must be developed in collaboration with Autistic people that are inclusive of differences in gender, sexuality, cultural and linguistic background, socio- economic status and geographic location. Effective and individualised support must be available to Autistic people across their life course, with a particular focus on improving support available for Autistic Australians living in rural and remote areas. All diagnostic and support services must be trauma-informed and recognise the diversity and variety of presentations among the Autistic community. In light of COVID-19, policies and processes must also be developed to support vulnerable Autistic people during epidemics and similar crises, and mitigate the potential health and economic impacts. 6. Develop inclusive education policy and practices to support Autistic children A national education training package, co-designed and delivered by Autistic people, should be developed for all education settings to ensure a nationwide consistent standard for Autism education. The package must focus on inclusion and acceptance of Autistic children within education settings, and set a standard for reasonable adjustments provided for Autistic children. Additionally, the training package should support educators to empower Autistic children to be self advocates rather than focusing on compliance and behaviour modification. 7. Improve NDIS support for Autistic people NDIS staff must be trained to understand and positively engage with Autistic people, and provide greater support and empowerment for Autistic people to plan and choose the services they need. NDIS funding for Autistic people must be consistent across the service and appropriate to our support needs. 8. Reject interventions that harm Autistic people Applied Behavioural Analysis (ABA) and other interventions that are predicated on suppressing Autistic behaviour must not be supported in government-funded programs. Governments must play a strong role through legislation and community awareness to outlaw and advocate against actively damaging alternative interventions. 9. Refocus research on therapies and interventions that would support improved life outcomes for Autistic people, rather than causes and cures All research pertaining to Autism or Autistic people should include Autistic people in its design and delivery. Research should have a trauma-informed and life course approach, that recognises the diversity and complexity of Autistic people’s lived experience. 10. Develop a National Autism Strategy founded on an Autism-positive framework The development, implementation and monitoring of a National Autism Strategy must include Autistic people in key roles. It must recognise and respond to the diversity within the Autistic community, and be premised on a holistic policy approach that works within the social model of disability. 3 www.tara.org.au TARA submission to the Senate Select Committee on Autism The Autistic Realm Australia Inc (TARA) The Autistic Realm Australia Inc (TARA) is a not for profit incorporated association providing support, education and advocacy for Autistic people and the parents and carers of Autistic people. As an Autistic-led organisation, we put Autistic people at the centre of our work. We honour diversity as Autistic reality, acknowledging and supporting all of our members whatever their history, expression of identity or support needs. TARA is founded on the core position that Autism is a form of neurodiversity, a natural part of the diversity of human neurology.1 As such we repudiate all therapies aimed at compliance and suppression of Autistic behaviours, reject stigmatising
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