Changing the autism conversation

When Tori Haar was first diagnosed at age 23 as being on the autism spectrum, the response from others meant her initial reaction was to hide it.

“It took about a year after diagnosis that I thought, well I can either try and ignore this and fight against it, or I can use this as a way of understanding myself, as a positive thing, and then try to make things easier for others than they were for me,” she says.

Fast forward nine years, Haar clearly embraced the second option.

With several academic qualifications under her belt, including a Master of Disability Studies, and experience across research, education and government policy, she’s fast becoming a leader within the autistic community and a regular speaker at national and international autism conferences.

She stepped it up in recent years, to develop and manage “Future Leaders”, a unique leadership program designed by and for autistic adults through the Autism CRC and Autism Spectrum Australia, which is taking applications later this month.

“The program sits in an interesting spot, in that it’s not an employment program,” says Haar, who was recently named a Westpac Scholar. “As a by-product, investing in and encouraging people may increase their employability, but a job isn’t the only way for people to make a real contribution. Instead, the purpose of the program is to find people who have a lot of potential but would really benefit from connecting with likeminded peers and being supported to develop their leadership skills and self-confidence.” 

An estimated one in 70 people – or almost 300,000 Australians – are on the autism spectrum, according to Autism Spectrum Australia. While it affects people in different ways and degrees, it mainly impacts social interactions and may cause restricted or repetitive behaviours and interests.

Haar says despite the significant value neurodiversity contributes to society, there remains “community stigma” and “a focus on people’s weaknesses which means we can lose sight of strengths”. These are likely contributors to low levels of employment among people on the autism spectrum, the most recent Australian Bureau of Statistics data showing the unemployment rate among this cohort at almost 32 per cent – more than three times the rate for people with disability (10 per cent) and six times more than people without (5.3 per cent).

The eldest of four siblings, including a brother also on the autism spectrum, Haar says as a teenager her parents suspected she may be on the spectrum, but she didn’t seek a formal diagnosis until adulthood.

At 15, Haar was chosen to be a founding student at the Australian Science and Mathematics School in Flinders University in Adelaide. She was a standout student, but recalls some confusion about the increased social demands that came with adolescence, having poor judgement in identifying people’s intentions and becoming anxious about the pressure of perceived expectations.

During university, she finally decided to find out either way.

“I went and argued why I didn't have autism, but walked out with a diagnosis anyway,” she says. “And because other people's reactions to my diagnosis were quite negative, that made my reaction quite negative.” 

Since then, she says being autistic has become a valued part of her identity, colouring “how I think and experience the world”.

In 2013, after moving to Canberra for a graduate position in public service, Haar was selected to be part of the first Future Leaders, a small program run in conjunction with the 2013 Asia Pacific Autism Conference she says was life changing.

Her experiences – along with those of the other autistic people who make up the bulk of her project team – have been integral to the program’s redevelopment, which she is leading in its second year following the graduation of 14 participants in 2018.

The program aims to connect autistic people with an interest in leadership and give them skills and practical opportunities to grow in confidence. An important element is volunteer work placements, last year’s participants taking roles in a variety of organisations including art galleries, a construction company, government departments and disability service providers. Interest is being sought from businesses and organisations to host future participants.

In addition to achieving outcomes for participants, Haar hopes the program will help drive a broader conversation around inclusion and valuing people who think and approach the world differently. In the employment sphere this may lead to more customised recruitment programs to attract neurodiversity like those that have been run by Westpac, DXC and JPMorgan.

“I hope it can help to develop more understanding and appreciation of autistic people, what they're able to offer, and allowing them the opportunities they need to be able to showcase their potential and shine,” she says.

“If people who are successful and have positions of influence are willing to be open about the fact that they're on the spectrum, that opens the doorway to changing the conversation about how all autistic people can bring value to and be included in our society.” 

Tori Haar was awarded a 2019 Westpac Social Change Fellowship.