A version of this commentary appeared in the Globe & Mail, Huffington Post and the Winnipeg Free Press

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It’s time we do something about it

Summer is almost upon us, so yesterday I spent $418 on 11 half-hour swimming lessons for my nine-year old son at the local rec centre. Why so costly?

Because my son has autism, the most commonly diagnosed neurodevelopmental disorder in Canada.  He’s not able to take regular swim classes which cost a fraction of the price.

The pool environment is too stimulating.  He gets distracted by the playful reflection of light off the water, by the high ceilings which catch the children’s voices in booming echoes and the ceiling fans, which are endlessly swirly.  With all this sensory input, he can’t easily focus on what the swim instructor is saying.  He also doesn’t always understand the social dynamic or verbal instructions of a group-based lesson.

This hypersensitivity to his environment, along with processing delays in verbal and social communication are common hallmarks of autism.  The upshot: he requires private swimming lessons — something which costs me in the neighbourhood of $1200 annually.  But it’s well worth it.

A new American study has confirmed what every autism family has heard anecdotally:  accidental death by drowning is a significant risk for kids with autism.  Researchers at the Center for Injury Epidemiology and Prevention at Columbia University looked at more than 39 million death records over a 16-year period (up to 2014) to determine the relationship between autism and death by injury.

The results are pretty bleak. Overall, individuals with autism died on average almost 36 years younger than the general population.  Almost 28 per cent died prematurely by injury, which includes complications from epileptic seizures and suicide (both epilepsy and depression are common in this population).

According to the study, individuals with autism also die by accidental injury at a rate three times higher than the general population.  The rate was particularly high for children younger than 15 years of age.

Why? According to the researchers, almost half (46 per cent) of unintentional injury deaths for children with autism occurred by drowning — and the “danger years” are between ages five to seven.

When compared with typically developing peers, researchers found that children with autism drown 160 times more frequently — an astounding statistic.

Several earlier studies show similar patterns of a significantly increased risk for accidental drowning for those with developmental disabilities, including autism, though the range of risk varies widely.

The good news is that something can be done.  These are preventable deaths.  And public health officials should put concrete and actionable ways to prevent accidental drowning in this specific population at the top of their to-do list.

The first solution is obvious — and cheap as chips.

Providing accessible water safety courses and swimming lessons specifically tailored to those with autism would be cost-effective to implement and have almost immediate impact. Such programming would have the double bonus of providing both safety and recreational benefits for autism families.

Working with and adequately funding organizations like SwimAbility, a volunteer-run swim program for those with developmental disabilities (which operates on a shoe string and always has more demand than it can meet), could be a good place to start.

Education and awareness of water danger risks targeted at the caregivers for this population should also be a priority.  Providing funds to help families and schools put physical safety measures in place — gates and specialized locks, for example — would also be a help.

But part of the conversation also has to be about the lack of adequate supports for families caring for autistic children experienced clear across the country.

One challenge of caring for a young child with autism is their tendency to “wander” — a common characteristic for around half of those on the spectrum.  They are also often attracted to water as a pleasing visual sensory stimulus.  And they are also more likely to have irregular sleep patterns — which means they may wake and wander while the rest of the family is still sleeping.

Put this all together, and you have a population particularly vulnerable to accidental death by drowning.

So what else can governments do?  Provide funds for regular respite for caretakers and give autism moms and dads a needed break.

If any other population had as much as 160 times greater risk for a preventable death, you could be sure it would garner headlines and immediate public health action.

Public health and children’s ministries should work together to find a solution here.  Kids with autism are already vulnerable on so many fronts. Let’s work together to avoid unnecessary tragedy.  Let’s all have a safe and water-friendly summer.

Kathleen O’Grady is a Research Associate at the Simone de Beauvoir Institute and Managing Editor of EvidenceNetwork.ca.  She’s the mother of two boys, one with autism.

May 2017


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