Empowering People on the Spectrum

Through mentoring, advocacy and education, a network founded by people on the autism spectrum has set out to create a society that embraces the benefits of autism, writes Ellie Cooper in this week’s Spotlight on Social Enterprise.

People on the autism spectrum experience multifaceted stigma, including having their strengths and abilities written off as deficits. But chief enabling officer of the I CAN Network, Chris Varney, said the purpose of his social enterprise is to prove that people with autism can achieve anything.

“Our vision is a world that benefits from embracing autism, which is quite a radical vision if you think about the way autism has been commonly discussed – as a deficit, something to hide, ‘oh no my kid’s on the spectrum,’ ‘I wouldn’t want to be on that spectrum,’ unfortunately that exists in pockets of the community,” Varney said.

“We’re Australia’s first social enterprise founded by people with autism… and the purpose is to prove what they can do.”

Through the I CAN Network people on the spectrum are mentored by other people on the spectrum, who create enabling support structures that support individual strengths.

Varney identified the need for the I CAN Network when he was a youth representative to the United Nations in 2009.

It was the first time he felt comfortable publicly disclosing that he was on the spectrum without fear of discrimination.

“Because I was in an influential role that I realised could not be taken away should someone perceive that my autism meant I couldn’t have the job, I felt a determination to share my story and the fact that I was on the spectrum with people,” he said.

“I was 21-22 at the time, I hadn’t really raised my autism in many circles, but then I realised I’ve got an opportunity here to actually make things a lot safer for this generation, so I said right let’s give this a go.”

Varney then spoke about his experience at 140 schools, whose support structures for students on the spectrum ranged from good to terrible, and said the need for the I CAN Network was overwhelming.

“Everything was focussed on early childhood, which has a lot of good evidence behind it but of course the challenge is you can support someone intensively in early childhood and give them functions for life, at the same time you have to be raising them for an equally supportive experience in their teenage years,” he said.

“That’s when we form our sense of self, our identity. The framework we’re raised with in our 10 to 14 year age bracket is very important to our ongoing self-esteem, so I CAN responded to the need that there was nothing for teenagers, young adults and some kids, so it grew out of that need.”

But Varney said the opportunity to develop the first phase of the I CAN Network happened by chance.

“A lot of these social enterprises occur by accident… I had been dreaming of this network for a time,” he said.

“I had done a TEDx which had been well-received and very much felt affirmation for the vision that I was casting of a rethink of autism from ‘I can’t’ to ‘I can’ and making sure we benefit from embracing autism.

“I was on Twitter and a teacher from a South Morang [Victoria] school tweeted me and said ‘I’d love to catch up and talk about my school.’”

Varney met with the teacher and he recalled all the great mentors who had supported him throughout his schooling.

“She said ‘look I’d really like to use a bullying grant I’d received from the government for good use and for something long-term,’” he said

“So she spent the money on I CAN and a pilot program of our mentoring, and so that has continued, it’s been around for about two years now. Once one school does it well others want to follow.

“The business model is accidental. She gave us $2,000 in the beginning and after that when we costed everything properly we had proper packages. Schools are definitely the life-blood.”

Since forming in November 2013, Varney has created three business arms, the first of which is the core mentoring program.

“We have a suite of mentoring programs that are based on a model of mentees who can be aged from eight years old in our primary schools through to early 30s,” Varney said.

“Our mentees eventually move up to mentor level with us. When I CAN is at its best that’s when that’s happening, but of course not everyone needs or wants to be a mentor so people take away different outcomes from I CAN.”

I CAN currently runs programs at 15 schools, three universities, with Swinburne as the flagship, TAFEs, businesses, and community events. Camps and one-on-one mentoring is also available.

“Schools, universities, businesses and communities purchase a group mentoring package and of course one-on-one mentoring comes at an additional cost for individuals and families who want that,” Varney said.

The second business arm is a speakers agency where people on the spectrum share their stories. Varney said the intention is for these advocates to become “champions for autism”.

“Importantly, it comes from a theory that we’re never going to see systemic change for people on the spectrum if people on the spectrum are not more involved or owning and driving the agenda and what that change should look like,” he said.

“We will never have an accurate view of autism without more people on the spectrum sharing their stories, so the speakers agency responds to that need, it’s purpose is to inspire people by proving through speakers’ stories what people with autism can do. “

The final business arm is professional development workshops on offer to schools that want to improve their support practices.

“We call our method, which we learnt from working with people on the spectrum, the Quiet Magic method, which is all about enabling not labelling people on the spectrum and creating environments that are free of the stigma that inhibits people on the spectrum. Quiet Magic is our tool box and we train people in it,” Varney said.

He said the model of having the mentoring networks led by people on the spectrum was integral to the success of I CAN.

“The first goal is to drive a re-jig of autism from ‘I can’t’ to ‘I can’, and we achieve that through just being ourselves, a group of autistics who do what they can do,” he said.

“I think we did really well with I CAN in our teams, we really prioritised our teams, so that came number one for me. The team’s the business model, they’re all past mentees.

“And then of course we have a minimum 50 per cent requirement that the board, management and the team are on the spectrum. I’m very proud of that because that means that we’re really true to our purpose.”

Varney found the major challenge in starting a social enterprise was building a new idea without any existing framework.

“It’s an all-consuming experience, it’s very hard when you’re doing something that no one else has done and you’re really actively pioneering something and so you have to spend time breaking the ceiling,” he said.

“The beginning was extremely creative, we were open to change and certainly we learnt a lot… but it requires a lot of bravery, especially if you’re in a field that needs a lot of innovation like I CAN.”

Since its inception, the network has mentored 230 people on the spectrum, including 182 last year alone.

“Our mentees definitely report a greater self-confidence and self-esteem. People are almost relieved when they meet us because ‘my autism isn’t a bad thing, this is who I am, there’s nothing wrong with me, it’s not about wrong or right, I just operate differently’, so that’s really healthy,” Varney said.

“This boy named Brendan, who was from the original South Morang school, said that he just sees I CAN as a program where he can just be himself in a space that feels safe, which I thought was awesome.”

I CAN’s speakers also reached more than 10,000 in person last year and achieved 80,000 hits on YouTube through digital campaigns.

He is now looking to scale the I CAN Network and create more partnerships through a targeted promotion plan.

“At the moment my TEDx and word of mouth tends to be how we have done promotion, we’re getting far better at marketing, we’re rapidly working on all the back-end of that,” he said

“The partnership model is schools who have heard of us contact and say ‘what can we do, what can we do’. I haven’t met a principal that wouldn’t want to say yes, but for funding restrictions.

“We would love to see an I CAN network at every university and TAFE and we’d love to set up great demonstration schools with the I CAN message.”

Varney said people on the spectrum can experience many types of stigma, which entrenches disadvantage.

“Stigma is a multi-layered thing and there are many different types of stigma, but at the meta-level people on the spectrum are not well-understood on the Australian agenda,” he said.

“Certainly there’s pockets of funding behind it but what is missing is an understanding that this cohort of people really can do anything.

“There needs to be more people on the spectrum getting out there speaking, mentoring. The stigma exists at several levels.”

He said a cultural re-think of the autism is needed, not only for those on the spectrum, but because Australia is missing out on their strengths.

“Employers tend to want to employ a gun, and at the moment there needs to be work done, and I hope I CAN can really be a leader here, in demonstrating ‘this is what people with autism can do, they are a gun, you set it up like this, they will blow your mind,’” he said.

“Only 19 per cent of young Australians on the spectrum are gaining a post-secondary qualification, only 42 per cent of Australians with autism are employed so our economy is really missing out. We need to prove that that’s shocking.”

Varney has met hundreds of students on the spectrum and said that while strengths are often specialised, including his own, focus, memory and attention to detail are common.

“Autism is just a focussed life, you’ve got great concentration and listening skills around topics you’re motivated by,” he said.

“When I was a kid I could recite to you the royal families of Europe across five centuries because I was a young historian, nine going on 90. It was pretty extraordinary to do at nine.

“And then I think a common misconception is that this group aren’t empathetic, but they’re actually very empathetic.”