How to stop the leading cause of death for autistic children

Kinderling News & Features

In Australia, almost all kids are taught to swim from a very early age. We're surrounded by water, with the ocean close for most of us, and for the rest there's normally a pool not too far away. But learning to swim isn't always easy for children on the spectrum, with drowning the leading cause of death for autistic children.

According to the Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers (SDAC), an estimated 164,000 Australians had autism in 2015. 

Autism Swim are national Water Safety and Swimming Specialists in Autism Spectrum Disorder (ASD), working with swimming centres, schools, families and surf life saving clubs to teach water safety in the autistic community. 

There are some pretty scary statistics surrounding drowning, so they've given us some information about the issue, plus give ideas on how you can make a difference.

What are the statistics?

  • Drowning is the leading cause of death among children with ASD (University of the Sciences in Philadelphia, 2014).
  • According to the National Autism Association, accidental drowning accounted for approximately 90% of total deaths (US) reported in children with ASD ages 14 and younger in 2009 to 2011.

As of last month, further statistics have come to light (American Journal of Public Health), outlining that;

  • Drowning accounts for 46% of all injury deaths among children with autism, which translates to 160 times the chance of dying from drowning compared to other children.
  • Individuals 14 years and younger are 40 times more likely to die from injury than the general paediatric population. 

Why?

Wandering 

Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which has the potential to result in potential harm or injury. It is often referred to as absconding, elopement or fleeing.

It is not uncommon for individuals with ASD to become overstimulated with crowds, noises and a range of other stimuli, hence escaping this by retreating to another environment. Many individuals with ASD gravitate towards bodies of water as they may associate water with alleviating many of their sensory needs. Research indicates that nearly 50% of children with ASD attempt to escape from a safe environment, which is a rate nearly four times higher than children without autism. 58% of parents of ASD children report wandering/elopement as the most stressful of ASD behaviours (National Autism Association).

Listen to Autism Swim Clinical Director Erika Gleeson on Kinderling Conversation:

In addition to drowning, wandering brings with it other high risk factors, including but not limited to exposure to the elements; dehydration; falls; hypothermia; traffic Injuries; encounters with strangers; and encounters with law enforcement.

Difficulties with Generalisation 

Generalisation refers to ability to transfer skills and information learned in one setting, to other settings, people and activities. 68% of the individuals with ASD who represent the 91% figure above, died in a nearby pond, lake, creek or river. So, although many individuals with ASD may have had swimming lessons and developed swimming skills in pools in the past, they may experience difficulties in generalising this skill across different environments (lakes and the beach for instance).

Lack of specialised services

Many swimming teachers may have undertaken additional training in ‘special needs’ however until recently, there has been a severe lack of specialised training specific to ASD and swimming. There is a need for instructors to understand the ways in which individuals with ASD process information and acquire new skill sets, so the classes can be individualised and tailored to the strengths of the individual. We very sadly hear from parents on a daily basis who share the ‘horror stories’ from their child’s swimming lessons. Now, swimming centres can have the support, training and resources necessary to make progress in the pool with their ASD swimmers. 

Difficulties with perceiving danger

The risk of drowning increases with the individual’s ASD severity. Our brain stem/’primitive brain’ governs our instinctual capabilities, and for many individuals with ASD, they have difficulties with anticipating danger and judging risk; this is exacerbated if the individual simultaneously has an intellectual disability. 

Lack of awareness

The data also showed that only 50% of parents of children with ASD have received advice about wandering prevention from a professional. Sadly, many in our community are unaware that wandering is even an issue or that drowning is such a high-risk factor for individuals with ASD.

What can be done?

Talk

Your interest in this information and the issue as a whole, is a start. As with most things, awareness and education is key. From 2009 to 2011, 23% of children who died following a wandering incident were in the care of someone other than a parent. Talk with those around you and educate them on the risks.

Wandering/drowning is most likely to occur under the following settings:

  • During warming months
  • Visits to non-home settings, such as a friend’s house or when on holidays
  • During family gatherings
  • During times of stress or escalation, which may cause the individual to flee or wander

Take extra precautions and plan accordingly. Family gatherings or other events may give a false impression of high supervision, which is often not the case.

It's reassuring to see so many researchers, media representatives and clinical professionals now beginning to develop an understanding of how underreported these statistics are, however there is still a long way to go in generating the necessary exposure pertaining to these issues.

Government initiatives

This is a worldwide concern; however, some countries are leading the way in prevention initiatives better than others. The USA for instance, have developed a ‘Big Red Safety Box’.

This is inclusive of a range of preventative and reactive resources in relation to wandering including emergency plan templates, individual identification aids, checklists and signage; and it’s free. The more awareness that is raised, the higher the likelihood that governments will respond.

Autism Swim is currently putting together a ‘Wandering and Drowning Prevention Kit’ which should be available to parents mid this year. Please email hello@autismswim.com.au to place your name on the waiting list.

Enrol your child in specialised swimming lessons

Enable your child to have the best opportunity possible to learn water safety and acquire swimming skill sets. Enrol them in specialised swimming lessons, being run by Autism Swim Approved Instructors. Be sure to chat with your local swim centre about them becoming ‘Autism Swim Approved’. The further we can reach, the better geared we are to facilitate change. 

Assist your child to develop Generalisation skills

Autism Swim runs a range of different programs to assist with this, including our modified nippers program. There are many other great initiatives out there which assist with this vital skill-development, including Surfers Healing and Disabled Surfers Association of Australia. For further tips on what you can be doing to further facilitate your child’s skills in the water, this blog at autismswim.com.au may help.

Positive Behaviour Support

If your child has a propensity to wander, consider Positive Behaviour Support to ameliorate this. Behaviour Specialists will undertake an assessment of the behaviour and design associated strategies and programs to help ameliorate the behaviour/s. An Occupational Therapist may also be able to assist.

If you have a question or comment, or would like to share your story, please get touch with Autism Swim at hello@autismswim.com.au. We’d love to hear from you. 

Additional references:

((Lethal Outcomes In Autism Spectrum Disorders (ASD) Wandering/Elopement; Lori McIlwain, Wendy Fournier Jan 2012)