Drowning in Need: Autism and Swimming in New Zealand

The ability to swim is particularly vital for autistic children, as they are 160 times more likely to drown than other children are. That shocking statistic is a result of many factors, including that about 50% of autistic children wander, and that autistic children are notoriously drawn to water; add in the fact that many autistic children struggle with the coordination and comprehension that aids successfully learning to swim, and you can see why such a frightful statistic is a reality.

Both my autistic children have had swimming lessons. Neither of my children can swim. Both of them have been wanderers too – most especially my youngest who is easily distracted and doesn’t typically look where he is going. He once wandered from school during the school day, running across a busy road at five years old, and at one point had a record number of five adults trying to find him at once on school grounds. My youngest is also quite attracted to water. He has dyspraxia, and sensory issues with water on his face, so it’s perhaps predictable that he hasn’t been able to learn to swim yet. I refused to give up trying though. After years of trying to teach them the basics – through schools and through my own efforts – I spent another year desperately searching for an appropriate person or place to teach them this life-saving skill.

The problems with finding the right person and right place, for a child with autism to learn swim skills, are numerous: Finding someone or somewhere comfortable dealing with children with limited coordination and communication, teaching in groups that aren’t so large that the child is overwhelmed by splashing and noise from the other students and that the autistic child can get the one-on-one assistance necessary, even simply finding a place that provides a changing area where older children are allowed to change with different-sex parents (you’d be surprised what a minefield that one is). Some places won’t accept older children (such as my eleven year-old) to take part in beginner-level classes because they are considered too old to be part of the group, which surely makes a farce of calling it a “beginner-level” class (instead of, say, a 4-7 year-old class).

And then there’s the barrier of payment, and I don’t just mean the pure cost, I mean what you’re getting for what you’re paying and how long you’ll need to keep paying it for. If I’m expected to pay $20-$40 a lesson (which appears to be about the norm) I’d hope that there comes a point where the skill I am paying them to teach my child, actually gets taught. I don’t want to be paying the month or 10-lessons in-advance that they request, to find I am hundreds of dollars down at the end and my child still can’t float or even put their mouth under water. You’re paying for nothing, it’s just throwing a precious resource away. Based on past experience, simply getting more of the same sort of lessons would seem to be be a waste of money, particularly for my youngest who has essentially made no progress. He’s seven. Still, you keep hoping there is someone out there who will make a breakthrough, you have to keep trying, you can’t just give up on something so important for safety, particularly when your home country is a bunch of islands and your neighbourhood is easy walking-distance to multiple beaches.

With all this is mind, I was relieved and excited to see an ad for a local swim-school offering a month of free lessons (being five lessons this particular month) specifically for primary-school aged children who hadn’t developed basic swim skills. Perfect! What a great way to see if the lessons would actually make a difference this time, without losing hundreds on the way. I signed up my youngest son, who is still primary-school age. I wasn’t the only parent of an autistic child who jumped at this opportunity, as I would soon find out, and what we autism parents all had in common in this area and line of thinking was eye-opening.

There are five children in this beginner group, being taught by two teachers. So far, I have ascertained through simply chatting to the parents I’ve encountered so far, that three of the five kids have autism. The other parents I spoke too all said, without me having to say it first, that paying for swim lessons when their children struggled so much with sensory issues around water, communication issues, and/or coordination issues, was a significant ongoing expense that is too hard to take on – all of us, to varying degrees, have had our children take part in swim lessons and in-school swim lessons before, and it hadn’t stuck for any of our kids. None of us were giving up though. There we were, trying it again, hoping the right person with the right method would make it happen. Because it can happen – some autistic children take to the water like a duck. In the lessons we’ve had so far in these sessions, we’ve all seen small progresses – the children not crying and panicking when water is splashed on them by others by mistake, or actually allowing water to run over their face, or putting their chins in the water, or jumping within water – small things, but steps in the right direction. Half the battle is building confidence around the skills that will evolve into water safety and life-saving skills. It can be done, with the right person and the right approach.

But now the lessons are drawing to a close. And we’re all unsure what to do. Do we now start paying for lessons, which are making such minuscule progress – will we even see any further progress? It would be an easy (or easier) decision if the lessons were cheap or subsidized in some way – in some way that acknowledged that we’re not getting the same value from each swim lesson that every other child appears to get, in some way that acknowledged too that we’re going to have to pay for a heck of a lot more lessons before we reach even basic skill level. One of the parents told me she’d made enquiries about taking up further lessons despite the cost, but she’s still very unsure, not just because of the cost, but because she’s been told the individual who was working so well with her son would not be assigned to any of the next set of beginner groups. That relationship had been key, in her view (and I’d agree with it having watched her child this past month), to her child’s growing water confidence. How’s she meant to decide if it’s worth progressing with a paid-month’s lessons when the circumstances (both time of day and personnel) are going to change? That parent has even asked the centre if they’d be willing to charge her less due her to son’s disability, they said they’d get back to her on that.

So how do we, as a country and as an autism community, address all these challenges that get in the way of our children learning this fundamental life-skill? Children in New Zealand have swim lessons through school, but the quality, number, and accessibility of those lessons varies wildly. In the schools my children have been part of, the variation has included a school having no pool but requiring parents to pay for private lessons during school time and off school grounds, a school having its own pool that was so cold half the battle was getting the kids in the water and having no professional swim-instructor involved throughout the swim season, and a school that had its own (also cold) pool but that brought in professional instructors to school grounds. Some gave swim lessons once a week, some twice or three times a week. There appears to be no consistency, and it would be hard to demand consistency when schools’ access to pools and funds vary hugely too. So schools can’t be the answer, it seems.

I suggest, as a starting point, we need a heck of a lot more awareness and advocacy around the issue of swimming and water-safety from autism and disability advocates and those who professionally work with our children. I was blissfully unaware of the drowning statistics and huge danger of water to my autistic children until I heard about it from other families and through online research – surely the concern about water, in a city surrounded by it, should have been highlighted and addressed from very early on after diagnosis, not years later. In turn, we need more ready access to disability-friendly swim lessons, it would be great to see each swim school providing some training in this and providing the option among their class sets. It would also greatly help if the cost of these lessons wasn’t prohibitive, perhaps if it was directly subsidized by a relevant charity or government service or as a community-friendly endeavour by the swim school itself. Such an essential life-skill, for a hugely at-risk section of the population, shouldn’t be limited to those with hundreds of dollars to spare each month.

No doubt there will be those who comment below with links to people or places they know that don’t charge the earth, that are disability-friendly, or existing funding options to reduce the cost. Please do share these – they will be well-received and greatly appreciated. The problem of awareness – of the drowning issue and of the availability of these services and funding options (if they do exist out there) – remains. I will do my small part and start a dedicated page on my blog with information on New Zealand swimming places and costs, and with your recommendations on who and what and where has worked well for you as fellow autism families. I’ll set up the page soon, as more information comes in, and provide a link here once it is up and running. Feel free to share anything else that has worked for you too in teaching your autistic kids to swim.

 

Related story from my blog, from 2012: “Risk: ‘Catastrophic.’ The foreseeable death of Julian Stacey.”

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