Toileting | Ambitious about Autism
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Toileting

It may not be every parent's favourite subject, but learning to use the loo is one of the big ones for your child.

Boy sitting on the toilet © Photo by Federico Rostagno

Have you ever tried talking to parents of neurotypical children about toilet training? Chances are their advice wasn’t very helpful. What works for a non-autistic child very often doesn’t work for your son or daughter – and learning to use the loo is one of the big ones.

In the long term, it really is important for a person to learn how to go independently. That’s probably not news to you if you’re sick of changing nappies and cleaning up accidents – you’re probably desperate to get the issue sorted out – but it’s not just self-interest on your part: it’s also better for your son or daughter. Being able to keep yourself clean is much better for your dignity and self-respect, as well as reducing the chances of picking up nasty germs (or, indeed, spreading them); it also makes a person less vulnerable if they don’t have to depend on everyone around them being patient and trustworthy every time they need the loo.

However, learning how to manage this can be surprisingly difficult for someone with autism. Some suffer from gastro-intestinal (GI) issues, which can complicate matters, but even if they don’t, mastering this apparently simple skill can prove complicated.

Why is it so hard?

Let’s look at why it is difficult to start a toileting programme for people with autism, particularly those with more complex needs. There are a lot of reasons for this but the three commonly discussed ones are:

Motivation

Or rather, the lack of it. Children with autism aren’t exactly people-pleasers. Where a neurotypical child may feel that fitting in with peers or obliging Mum or Dad are good reasons to learn toileting skills, a child with autism won’t be so swayed by people’s expectations. They may also not particularly mind the discomfort of being wet or soiled, meaning that there’s no strong physical motivation either. With no sense of social pressure or clammy underpants to bother them, they may simply not see the point.

Communication problems

Learning how to use the loo usually involves following verbal directions – and for some children with autism, that might be beyond them. They might not understand the words, or else they might take them too literally, which can cause endless problems with a subject so fraught with euphemisms. They might also not be able to tell you when they need to go or that they need their nappy or pants changed. It’s also possible they might have sensory sensitivities that make the experience unnerving – the feel of the loo seat or the gulf below them might be scary, for instance – but if they don’t have the communication skills, they can’t tell you that, so you can’t resolve it.

Fear of change

A new toileting programme is a new routine, and children with autism often resist that. Kids on the spectrum tend to be coping with unusually high levels of anxiety, and toilet training can ring a lot of alarm bells for them.

In other words, the basic impairments are liable to interact with autism in a way that can keep a child in nappies for years after their peers.

Sensory issues

People with autism often have sensory sensitivities; these too can affect how they use the toilet. Here are some common ones:

  • Sometimes the person doesn’t sense that their bladder or bowel is full and so doesn’t need to go to the toilet – hence, they end up having an accident. 
  • A child might actually like the sensation of having a ‘full’ toileting pad or nappy, and see no reason to give it up.
  • Some children with autism – to put it plainly – like to play with poo. The smell and texture of it interests them, and when you combine a desire for sensory play with no conventional sense of what’s dirty and clean … well, that’s how you wind up with poo all over your walls and furniture. If your child is doing this, it’s pretty ghastly for the parent who has to clean up, but do try to bite your tongue and keep your reactions to a minimum, as getting angry about it can actually lead to more smearing. When a child has problems communicating they can feel like any kind of influence over people’s feelings and reactions is a success, and can start smearing partly to get attention.
  • Some children with autism don’t like certain physical aspects of the bathroom – the smell of the toilet or of cleaning products, the lights, having cubicle doors open and closed, and so on. Some kids hate the sound of flushing water; others like it so much you can’t get them to pee because they’re so busy playing with the flusher. Public toilets may also scare some children, as the sudden roar of a hand dryer can be an unbearable sound – and once a child with autism is scared of one public bathroom, they’ll likely be scared of all public bathrooms, or all bathrooms of any kind. 

In short: autism often brings with it either hyper-sensitive or under-sensitive senses, and these can have a knock-on effect when it comes to toileting.

So how do we start toilet training?

Let’s be honest, it’s difficult – but you almost certainly will want to start a toileting programme. Where do you begin? Start by asking yourself: Is my son or daughter ready? Am I ready? Are the other professionals involved ready and on board?

Once you take on the challenge – particularly if your son or daughter has complex needs – then realistically it’s going to take time and put considerable demands on your stamina. Some good resources to start with are:

Continence Issues in Children and Young People with Autism from Together Trust: A comprehensive overview, which also covers issues like constipation and smearing.

Toileting Problems in Children with Autism from Nursing Times: A perspective from a nurse’s point of view.

You’ll also find it easier the more you understand how your son or daughter communicates – that way, he or she has a way of telling you things and you can do some teaching. You’ll be the expert on this; if you think visual aids will be helpful, there are a number of online resources, for instance: Toilet Training for Children with ASD from Raising Children.

Gastro-intestinal (GI) problems

It’s not universal, but people with autism are more prone than the average citizen to having gastro-intestinal problems. These can include:

  • Chronic diarrhoea or constipation.
  • Irritable and inflammatory bowels.
  • Gastroesophageal reflux disease (GERD).

Some practitioners also propose that ‘leaky gut syndrome’ – a porous bowel that leaks germs into the bloodstream – might be associated with autism. This is more a hypothesis than a proven condition, and the NHS website states that there is ‘little evidence to support this theory’. However, we’re including it here because if you’re a parent doing the rounds of health professionals with a child on the spectrum, you may hear it mentioned.

None of these conditions are a nice thing to have, and it’s worth noting that not everyone with autism has them to the same extent, or even at all. However, GI problems do cause pain and discomfort, which not only affects a child’s toileting but their general wellbeing, spirits and behaviour.

As a parent, you’re the closest to your child and your intuitions are important. If your son or daughter is in pain, he or she may not be able to tell you, so pay close attention and use your best judgement. If you think there’s a chance of GI problems, you need to go to a GP and ask to be referred to a specialist.

This is a useful link from the website My Bowel written by the UK’s leading neuro-gastroenterology consultant and discusses the benefits of bowel care: Improving quality of life with bowel care

Very few of us enjoy dwelling on what goes on in the bathroom; there’s a strong taboo about it, and cleaning up pee and poo are not fun. To get your son or daughter through toilet training is likely to call for a strong backbone and a strong stomach. However, the great majority of people with autism do grow up to be perfectly independent toilet-users; it may take longer, but the chances are good that you’ll get there in the end.

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