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Stopping Senseless Deaths of Those with Autism Spectrum Disorder

By Ben Cooper

 

· Australia,Health,Social Entrep

It's a stunning statistic - accidental drowning accounts for 90 percent of deaths of children with Autism Spectrum Disorder (ASD), per a 2014 report by the University of Sciences in Philadelphia. This translates to children with ASD being 160 times more likely to drown than their neuro-typical peers.

The report, which covers deaths of children aged 14 and younger between 2009 and 2011, led a young Australian woman to start an innovative international company fighting to change a disturbing reality.

It was late at night when ASD Clinician Erika Gleeson's life changed. She had been working on a government contract in the Australian capital city of Canberra with colleague Dr. Geoff Potter, and in the midst of their research they stumbled across the drowning statistics."It troubled me that I didn’t know the statistics, particularly as I’ve been an ASD Clinician for over a decade and not once in my studies, research, writing of journal articles, assessments or designing of programs had those statistics presented themselves," Ms Gleeson says.

After initially thinking the statistics were incorrect - the result of a typing error - she stayed up all night collating every piece of associated information. Alarmingly, the article was right. And unfortunately, whilst statistics are unavailable for her native Australia, it's thought the percentages would be comparable. "It stood out to me immediately how underreported the statistics were, " Ms Gleeson says, noting she's yet to meet a single person who knows about the statistics before being told.

More disturbing, however, was the extensive information on drowning statistics and horrific stories which contrasted against an absence of strategies addressing the problems. "There was no way I could turn a blind eye to something that I considered so very preventable, and something that I knew I was in a prime position to facilitate change on."

Erika Gleeson, founder of Autism Swim

Erika Gleeson founder of Autism Swim

Serious skills

It's a big task, but one she has the requisite skills to tackle. The Behaviour Specialist and Autism Specialist has worked internationally in London and Sri Lanka, as well as nationally across Perth, Canberra and Sydney. She's also been twice nominated for Young Australian of the Year and recently was named one of Australian Anthill's 30under30 winners.

"I was desperate for all of my clients to engage in swimming services," she says. "I contacted all the swimming services in the area, however the feedback I received was fairly consistent: they wanted to help, but lacked the necessary skills and expertise." Service providers also said they'd experienced failure after failure in the past. "I had all of the clinical knowledge in terms of how the ASD brain acquires skill-sets, how to respond to behaviours of concern, how to alleviate sensory challenges and the overall therapeutic and support needs of individuals with ASD: it was simply a matter of applying these to water environments.”

Photo from Erika Gleeson

Solution is born

Thus, was born Autism Swim (AS), a multi-disciplinary program using Behavioural Specialists, Occupational Therapists and Swimming Teachers to right the alarming wrongs of water safety for people with ASD. "I didn’t sit down and decide to start a business, meticulously planning how to go about this” Ms Gleeson, the company's Clinical Director, says. "I just leapt into action and the rest merely followed. I worked with a wonderful young man named Paddy in trialling our methodologies and principles. As a result, I was able to bring together a wonderful, clinical team to design training, resources and support packages so that this information could be really accessible for people far and wide."

AS now operates across Australia, the United States and Malaysia. It has become the peak body for swimming and water safety and ASD in Australia. It's received primetime coverage in Australia by television broadcasters the Nine Network and the Special Broadcasting Service, with total online views of these stories climbing upwards of 100,000.

Scenes of children confidently in different aquatic environments from beaches to pools dot AS's media coverage. It's a message which its founder is proud to distribute to the world. "It's hard to put into words the feelings we get when we witness the elation of those participating in our programs. The joy is palpable. You see the participants transform,surpass expectations, relax, have fun and bring a whole new meaning to the word 'possibilities'. We have so many tears from parents who didn't know their child had such capabilities. It's truly an inspirational thing to be a part of, and not for one day do I take that for granted".

Big future

It's been hard and significant graft over the first two years, and it hasn't happened in isolation. "We like to reflect and celebrate where we're at before we look at where we can go," Ms Gleeson says. "We have received a mighty amount of support since day one which we'll be forever grateful for. Fundamentally, we want Autism Swim to be the catalyst for changing the statistics. In years to come, I want to look at a statistical line graph and see the trend-line for drowning deaths in ASD decelerating significantly, all from the time that Autism Swim came to be. We want families to feel assured by what we're doing, instructors feeling confident in what they’re delivering and individuals with ASD being equipped with knowledge and skills so that they can engage in water activities safely and, ultimately, happily."

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