Fiona Churchman
My son Patch loves water. He races from the edge of the sand straight into the ocean every time we visit the beach. He'll spend hours in the pool, any pool, swimming from side to side or just floating on his back, calm and content. It's a joy to watch.
Patch's love of water is common among children on the autism spectrum. But I recently learnt the stats around childhood drowning and autism, and they're terrifying.
Drowning is the leading cause of death among children with autism spectrum disorder.
They are 160 times more likely to die from drowning than other kids, according to US records.
That's not a typo — 160 times more likely to drown.
So what can we do to change this? How do we keep our kids safe?
Helena's heartbreak with losing Georgia
Image Helena Sardelis will never forget her daughter, Georgia, who drowned in the family's pool six years ago when she was 13.(ABC Life: Fiona Churchman)
Helena Sardelis cradles her arm across her chest, resting a tattoo of her eldest daughter Georgia close to her heart.
My partner, Travis, tells her it's the most beautiful tattoo he's ever seen and Helena smiles "she is with me always".
Image Helena has Georgia's portrait tattooed on her wrist and regularly holds her close to her heart.(ABC Life: Fiona Churchman)
Helena got the tattoo after Georgia drowned in their backyard pool six years ago, aged 13.
"She could swim, it wasn't unusual for her to be in the water," Helena says.
"Not in my wildest dreams did I ever think this would happen."
Georgia was diagnosed with autism and cerebral palsy as a toddler and then epilepsy a few years later. It's estimated between 20 and 30 per cent of autistic people also have epilepsy.
After her diagnosis, Georgia underwent intensive therapy to learn to communicate.
Every night when Helena put Georgia to bed she would say, "I love you, Georgia" and wait for her reply, but for a long time she never got a response.
'Autistic' or 'has autism'? Just ask
One night when Georgia was four, she replied, "I love you, Mummy."
"I managed to hear it before I shut the door and rang everybody in my family," Helena says.
"It's like the best, best first words ever."
Helena and her husband Bill built their family home around a pool, with glass on three sides.
"When [Georgia] wasn't in the pool she would sit by the window and look at the pool because the sun would shine down and she loved it," Helena says.
Being in the water was Georgia's happy place.
"Water was a way for her to feel her body in space. She was always seeking water," Helena says.
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The day Georgia died she had been asking repeatedly to go swimming.
"I thought, you know, she has been so good and I can see the pool from everywhere in the house so I might let her go in and have a bit of a swim," Helena says.
Helena and Georgia made her bed together — "it's not something we did often, but it was a new skill that we were learning" — before she went in the pool and Helena continued to clean up around the house.
A few minutes later Helena's youngest daughter yelled out Georgia's name.
"I saw her floating so I jumped in the pool, pulled her out and started CPR," Helena says.
It's understood Georgia became unconscious after having a seizure in the pool and later had a massive heart attack in hospital.
"How do you let her go? It's not the way it's supposed to happen."
How do we teach water safety to autistic kids?
Image Erika Gleeson started Autism Swim to tailor swimming lessons to autistic children who learn things a little differently.(Supplied: Autism Swim/High Exposure)
Erika Gleeson discovered the shocking statistics around drowning and autism while working as a behaviour specialist with autistic children. It led to her establishing Autism Swim to teach water safety.
One of the main reasons the number of drownings is so high is the likelihood of autistic kids to abscond.
"We know that over 50 per cent of children with autism do wander. More often than not they gravitate to bodies of water," Erika says.
"The scary thing is that the average distance from home where drownings occur is only 290 metres, so it is super, super close."
Erika says autistic kids may also have a decreased ability to perceive risk and danger, and being in the water can be so fulfilling nothing else matters.
"Some are unable to process the depth, currents and rips, debris in the water, the fact that they should only swim with an adult, that their abilities don't match the conditions," she says.
What we needed to hear when our son was diagnosed on the autism spectrum
Another factor is swimming lessons for kids with autism may have gone badly for the child.
"Swimming instructors may understand swimming well … but that doesn't mean they understand the autistic brain and how that brain acquires skill sets," Erika says.
Autism Swim works with instructors on how to teach water therapy, water safety and learn to swim effectively to autistic children.
Erika says Autism Swim instructors are also specifically trained in working with kids who have epilepsy and how to spot seizures, which can be very discreet and hard to monitor.
Parents looking for support with teaching their kids water safety are best to look for instructors who have experience and training specifically for teaching autistic kids.
Teaching rules and rituals around water
All this information feels very close to home.
My son can swim, but he has no fear when it comes to water. Why would he when it makes him feel so good?
So how do I, and other parents, keep our kids safe?
My daughter concealed autism for 23 years. The diagnosis was life-changing
Erika says it helps to make sure your house is secure so kids can't get out and get to water, but it's also important to teach water safety rules.
"Every brain is different, so it is about how your child learns skills in other environments and then it's just adapting it," she says.
This could mean using repetition, social stories or cartoons to reinforce water safety.
As an example, Erika says one idea is to install a rule around water for kids that they can only get in the water if they first get a high five from Mum or Dad.
Over time the child will think, "I can't go in the water because I haven't high fived".
Another tip is to not assume that because your child can swim in a pool they will be safe and confident in another environment, like at the beach. They need to practise swimming in different environments and with different people.
"With adequate support, parents can engage in aquatic play and swimming at ocean pools, backyard pools, and even practising certain skills in the bath can help," Erika says.
Everyone has a role to play in keeping kids safe
Image Autism Swim says kids need to learn water safety in pools, rivers and at the beach to be safe in all environments.(Supplied: Autism Swim/Gavin Little)
Erika says it's one thing to say, "Have eyes on your children all the time", but that's sometimes easier said than done, and blame helps nobody.
"The kids we work with are such high risk and there's so many layers of complexity there," she says.
"At the end of the day, everyone is just trying to do their best.
Learning to swim in adulthood
"I know a little boy that can pile eight phone books on top of each other to get the keys.
"They are such clever little escape artists and it's nothing to do with the quality of parenting a lot of the time."
And once they are out and about, these kids are so vulnerable. More than a third of autistic children who wander are never, or rarely, able to tell someone their name, address or phone number.
That's Patch at the moment and it is a chilling thought, imagining my little boy wandering the streets with no way of telling someone where home is.
Erika says the wider community has a role to play in keeping autistic kids safe. If someone sees a child on their own near water don't just assume they are OK.
Instead, go up and ask them what they are doing, and if they can't answer you, don't walk away. Stay with them and call the police. You may just save a life.
'We will never forget her'
Helena and her family moved house a few years ago, carefully packing and moving Georgia's bed with them.
"I made my husband wrap that bed with cling wrap. We never unmade it. It's still exactly the way we made it together," Helena says.
Helena's house is full of photos of her three girls together. There's a stunning painting of Georgia on the wall in the living room — with her long hair flying everywhere, big smile and striking eyes.
"Life's gone on for everybody else and it's easy to forget. We'll never forget her," Helena says.
"As hard as we feel our lives are, trying to help our beautiful children navigate life with autism, life is so much harder without them.
"I would give anything to have my Georgie back."