You were appointed as Aspect's first Autistic Board Director in 2020. What did that appointment mean to you personally, and what message do you think it sent to the wider Autistic community?
Having joined the Board via the Advisory Council the experience felt less of a huge milestone as much as a natural next step, reflecting the strong relationship between the Board, the organisation and the community that had been built over time through the Board and Executive team working with and learning from the Advisory Council. That is not to say that it was not important, just that it felt honest and natural in the moment rather than some big leap of faith. It was one of a number of changes and new initiatives that happened around that time and reflective of an honest and authentic shift in culture which invited Autistic people to be part of the conversation in a number of ways.
The Board has a critical role in guiding and supporting the organisation and shepherding it in ways that we hope will allow Aspect to eventually reach its centenary and beyond. Of course, I’m also just one Autistic perspective and it is also important that we have initiatives like our Advisory Council and Think Tank, staff with their own lived experience, as well as listening to the community’s needs and experiences in our day to day work.
I’d like to think that in the last ten years Aspect has been seen more as an organisation for the Autistic community and our families as a whole and not just for those who attend our schools and services, and that representation of the Board is one part of how we demonstrate that intent and recognition. On a personal level, it’s been a privilege to learn and grow in my skill set and experience a different way of contributing to making Aspect, and in a small way, Australia, more accepting and inclusive for Autistic people.
What is one memory or moment from your time with Aspect that has stayed with you over the years?
Between my time on the Advisory Council and the Board there have been a lot of moments. The conversations that happen at school visits and events like a student you’ve never met before having the confidence to ask you to hold their jumper or join their game of tag. The collective pride and excitement as part of the Neurodiversity Rainbow float at Mardi Gras, and discussions where policy and language have incrementally evolved to be more affirming and inclusive.
One moment that does stand out is actually before I joined the Board when former CEO Adrian Ford put me forward to represent Aspect (alongside Dr Tom Tutton) and the Autistic community (alongside Dr Dawn-Joy Leong) as part of the organising committee for the 2019 Asia Pacific Autism Conference in Singapore. That conference was a great opportunity to open new doors and connections which allowed different cultures and perspectives to meet and learn from one another. I also presented some of the learnings from the Council to an international audience which I hope inspired other organisations to consider how the people they support might contribute to their organisation’s strategy and governance.
From your perspective, how has understanding of autism, and support for Autistic people, changed over time? What does inclusion for Autistic people mean to you personally, and how have you seen it take shape in your community or profession?
The recognition of autism as part of human diversity and our broadening understanding of what being Autistic can look like, along with the varying supports people might need over their lives has been huge. I am part of the generation of people who didn’t learn they were Autistic until adulthood, and I know many more people wanting to be seen and valued and be part of the conversation. There’s been a lot of progress and understanding for a lot of people, which we should acknowledge and be thankful for.
I don’t think we would have imagined that the Government would invest in a National Autism Strategy or the National Disability Research Partnership a decade ago. Or that we’d have an openly Autistic person like Grace Tame as Australian of the Year. It’s important to remember both how far we’ve come and the ways in which people might still be unseen or unsupported or left out of the conversation. I think the best progress is made when we listen to understand and seek to accept and include one another, and amplify and make room for people with different needs and experiences to ours. Progress isn’t linear and it’s important that Autistic people feel heard and supported across different events, circumstances and societal changes.
You were a founding member of Aspect's Advisory Council before joining the Board, helping bring the voices and lived experience of Autistic people into strategic decision-making. Why is it so important that organisations like Aspect work in partnership with Autistic people, and what difference does that make?
The short answer is because it’s the right thing to do and that there should be “nothing about us without us”. As a purpose driven organisation, the people we serve should be at centre of everything we do, and sometimes it can be harder to see the impact and benefits for an individual person when looking at the bigger picture. As humans we all have ways that our own needs, perspectives, upbringings and perspectives influence how we see things, what we value and how we make decisions.
An effective skills-based board is a great demonstration of seeking to listen and harness different perspectives to make the best decisions an organisation can, while considering many factors and potential implications. This makes some of the qualities often associated with Autistic people - like thinking outside of the box, questioning assumptions and being justice-minded - important assets when people are given opportunities to contribute and properly supported in doing so. At an organisation which seeks to support the strengths, needs and aspirations of Autistic people it’s all the more important.
Often inclusion is just a matter of not making a big deal of something that shouldn’t be a big deal and doing something in a slightly less traditional way that doesn’t expect the Autistic people in the room to be the ones who have to do all the changing and accommodating, so we can work together effectively for a common purpose and benefit.
All meetings at Aspect, including our Board meetings, start with a statement of inclusion which welcomes and acknowledges different perspectives and encourages people to express themselves authentically and ask for what they might need to be fully engaged. Often all that’s needed is something simple like taking breaks (and not being thought of as rude for needing breaks to actually be breaks, rather than networking opportunities), knowing what will be served for morning tea or being able to turn up to a board meeting wearing sneakers and a hoodie rather than business attire that may provide a sensory distraction and make it harder to engage.
Looking ahead, what would you love to see for the future of autism understanding and support in Australia?
I think there’s just so much potential in our community and in opening our minds to different ways of considering what might make a life joyful and meaningful. I would like there to be more flexible supports and understanding to allow people to create the lives they choose and be supported to be safe, happy and connected. I also sometimes reflect on Aspect as an organisation that was started by parents at a time where there was little support and understanding for Autistic kids and their families. The organisation has grown, learned a lot and adapted across the last 60 years, well beyond what I expect those founding families ever imagined or hoped for their children.
In a similar way, we now also have newer organisations founded and run by Autistic people and other people with disability in order to meet more newly recognised gaps. I would love to see some of those organisations grow and thrive and find their place - and I think there’s a wealth of opportunities for established organisations like Aspect to work in partnership with Autistic-led organisations and to teach, learn from and support each other so each can be stronger and more sustainable in supporting Autistic people and their families in their own priority and service areas. I hope that opportunities like the new Social Connections project being jointly led by Aspect and Reframing Autism will be an example of a further positive shift in this direction that will provide benefits to both organisations and an important source of support and information for the community.
As Aspect celebrates its 60th anniversary, what gives you the greatest hope for the next generation of Autistic children, young people and adults?
I think there is something in a spirit of generosity that is an important golden thread in Australia’s culture. Every Autistic person has inherent and irrevocable value and so many Autistic people want to be part of making things better for themselves, their peers and their community. The diversity of the Autistic community presents both a challenge at times and its greatest strength. There are just so many skills, interests and talents that people bring and different ways and paths that people are finding to create both meaning and stability in their personal lives but greater understanding and acceptance in families, communities and society as well.
Being part of the Board has reinforced for me that there are many different ways of contributing to change. Some get more public recognition and scrutiny while others are more in the background but equally, if not more, impactful and important. My hope is that we can remember that and make a point of acknowledging and appreciating all kinds of contributions and everyday encounters that we all can learn from if we open our hearts and minds. I hope that we can listen to, appreciate and at times be challenged by each other’s thoughts and perspectives and create spaces for people to be supported, contribute and grow. I think that will open doors for not only Autistic people but many others to be more engaged, connected and accepted as their authentic selves.
Tori Haar, BBehavSc(Psych), BA, DipGov, MDisSt, has over ten years’ experience in the government and not-for-profit sectors including project coordination, community engagement, policy development, research administration and data analysis. She is an autistic woman and has been active in the autistic community since receiving her diagnosis in 2013.
Tori works as project officer for community engagement in research at the Olga Tennison Autism Research Centre at La Trobe University. She previously worked as Community and Engagement Manager at Reframing Autism, an autistic-led charity, and in a number of research administration and community engagement related roles at Macquarie University and Autism CRC.
Tori received a Westpac Social Change Fellowship in 2019 to recognise and further her work around leadership and capacity building in the autistic community and was formerly a founding member of the Aspect Advisory Council.
Tori joined the Aspect Board in December 2020 and is Chair of the Governance Committee and a member of the People, Culture & Safety Committee. Tori is a Member-elected Director.
