The enterprise fighting to save lives in the water
2 October 2019 at 8:34 am
Children with autism are 160 times more likely to drown than their neurotypical peers. It’s a shocking statistic that Erika Gleeson’s social enterprise, Autism Swim, is fighting to change, writes Maggie Coggan in this month’s Spotlight on Social Enterprise.
For children with severe autism, the feeling of being in water can be a safe and happy one. Instead of being surrounded by overwhelming sounds they can’t filter out, being in water feels good, and is relaxing.
It’s also what’s most likely to kill them.
Some children with autism struggle with spatial awareness and may also have a decreased ability to perceive risk and danger, which Gleeson explains means they have a propensity to wander towards bodies of water.
This isn’t something that’s widely known in Australia, and it’s the lack of awareness and the fact that swim schools can be unable or can be unwilling to teach children with severe autism to swim that’s resulting in the high fatality rate.
As a senior behaviour specialist by trade, Gleeson tells Pro Bono News that after stumbling across the statistic, she was desperate for the kids she was working with to take swimming lessons. But she was faced with a roadblock.
“When I went and had a chat with the local aquatic providers, none of them were prepared to take on these individuals because their needs were too complex,” Gleeson says.
“So I said to them, look, if I start giving you training and resources and support for free, would you take on the individuals that I’m working with?”
What started out as a side project snowballed in under six months to a fully-fledged organisation with international clients.
Autism Swim now provides training resources to swim providers and runs workshops for kids and parents on wandering and drowning prevention across Australia and in countries from Thailand to Singapore and Scotland.
The enterprise’s revenue comes from charging aquatic therapists, swim instructors, and swim schools to become “Autism Swim Approved”, which includes instant training, ongoing resources, and access to the organisation’s team of health professionals.
The fees are funnelled into operation costs and workshops for parents and kids, which Gleeson says they do charge for, but aim to keep as low cost as possible.
Parents can also purchase a “wandering and drowning toolkit” and have access to clinical services that are charged out at standard National Disability Insurance Scheme rates.
Aside from seeing it as a more financially sustainable way to run the organisation, Gleeson explains she was drawn to the social enterprise model because it perpetuated the idea that inclusion could be profitable, just like any other business.
“Once upon a time, the world of disability was seen to be charitable, and it was about a society where you have to help those that are suffering,” she says.
“But these days we live in a world of empowerment, celebrating strength and having a real person-centred approach. The world of inclusion can be very profitable whilst still doing its bit for the community.”
In terms of their impact, she says their benchmarks for success are also a little different from what comes to mind for most.
A common issue Autism Swim faces, Gleeson explains, is the public might hear the name of the organisation and think it’s “cute” that the organisation is giving swimming lessons to people with autism. But it’s a lot more complex than that.
“The problem we are fighting is so incredibly complex and it’s not all lollipops and rainbows, it’s that people are drowning and then they’re being excluded from services,” she says.
“Celebrating a participant being able to swim 50 metres freestyle is really not a regular celebration for us, it’s more along the lines of a family saying to us that after eight lessons their child is engaging in eye contact, or that they actually walked into the swim centre.”
She says it’s during their workshops and events, hosted all over the world, that they mostly see the fruits of their labour.
One of the biggest events the enterprise runs is its Little Dippers workshop, a modified nippers surf education program run out of Coogee Beach in Sydney. For families with children with autism, the workshop gives them more than just the chance to pick up some new life-saving skills.
“Many of the families we work with won’t actually go to the beach because they might have two children with autism and one parent may not be a particularly strong swimmer. So these environments are often avoided by a lot of the family just because the risk factors are too high,” Gleeson says.
For Gleeson, who grew up in the New South Wales coastal town of Port Macquarie and spent most days at the beach, the realisation that many miss out on that experience because it’s too dangerous was a reason to do something about it.
“In one of our last sessions, I was chatting with a parent and she was just bawling her eyes out because her son was riding a surfboard,” she says.
“That’s something that she never, ever thought would be possible.”
She says at its current size, the organisation is financially stable. But with dreams of growing the enterprise and expanding its services, she knows the enterprise will need to start looking for external help.
“We want to grow even further internationally. We have really grand plans to go into surfing and lifeguards. And the only way we can do that will be through financial support,” she says.
“Our strategy moving forward will involve things like grants and corporate partners which will allow us to grow and diversify rather than just plod along.”
With summer fast approaching, Gleeson predicts this year’s “Little Dippers” season will be one of its biggest yet, with people having to join a waiting list if they want to take part.
The enterprise is also releasing a free water safety app in November, which Gleeson hopes will be a real game-changer for the number of people they are able to reach, and the lives they are able to save.
“This means that regardless of where people are based and regardless of whether there’s an autism swim approve service provider within proximity to them, we can provide something in the meantime that allows them to start developing some of those water safety skills,” she says.
She also notes that reducing the number of drowning deaths isn’t wholly up to kids with autism and their families, it’s an issue the whole community can help with.
“We all should have our CPR certificates up to date, and know-how to interact with a child who might be non-verbal that is wandering towards a dangerous situation,” she says.
“There is an overarching community responsibility here which we’re trying to educate people on.”
Find out more about what Autism Swim does here.