Toileting and autistic children
Published on 26 August 2021
Author: Lorraine MacAlister
Lorraine MacAlister is an autism training consultant for The National Autistic Society and co-author of the book Toilet Training and the Autism Spectrum. Here Lorraine discusses some of the difficulties that autistic children may experience when toilet training, and what can be done to support them.
Learning to use the toilet, particularly in a way that others see as appropriate, can be a challenge for some autistic children. There are a variety of different reasons why some children find the acquisition of toileting skills difficult - some related to being autistic, others related to specific physical difficulties. Or, it may be a combination of the two.
Common toileting difficulties for autistic children can include:
- knowing when they need to use the toilet;
- communicating the need to use the toilet;
- learning to use different toilets;
- sensory and environmental challenges;
- wiping themselves;
- smearing their poo.
It is a topic that many people still find hard to discuss. Parents may have felt incredible pressure around toileting from family, friends and other professionals, and some of the resulting advice may have been unhelpful or even misleading.
Causes of difficulties
There are some autistic characteristics that can lead to difficulties with learning to use the toilet (Wheeler, 2007; Coucouvanis, 2008).
Some of the language and communication around toileting can be confusing.
- They may not understand what you are asking them to do or could take things very literally. For example, the phrase ‘go to the toilet’ does not explain what they should be doing in there.
- A child may think that you know they have had a wee, without realising that they should tell you. They may also not know how to communicate this.
Some children may not be socially motivated to wear ‘big boy/girl pants’ or want to please you by weeing in the right place. They may find it difficult to understand how pooing in the wrong place can affect others, and are also less likely to learn new skills by copying other children.
Some children gain some skills but have difficulty transferring this knowledge to different toilets. Some have anxieties around using the toilet; think how cleaning product adverts suggest germ monsters live under the toilet seat!
Many children experience sensory differences. For some this can mean they do not register that their bowel or bladder is full or they don’t feel the need to go. Some might not be aware of wee’s and poo’s in their nappy, while others might enjoy the sensation. Some children may find the bathroom a very overwhelming room to be in due to the noises and smells.
It is also vital to look into whether there are any additional health problems that could be contributing to toileting difficulties. There is a risk that everything can get blamed on a disability, whereas there might be other continence issues that need investigated and treated.
Supporting autistic children
When working with an autistic child it is important to explore their difficulties from both an autism and health perspective. For example, a child may be in pain from a medical perspective, but they may not be aware of it or may not communicate it.
One of the biggest areas of concern that we have found delivering our training to parents and professionals, has been the number of children with undiagnosed constipation. A child may appear to be pooing but can still be constipated. Information leaflets from Bladder & Bowel UK and the Kids & Teens Area on ERIC’s website (for both children and adults) are useful reading on this issue.
There is a temptation to delay toilet training with autistic children. However, clinical experience suggests that preparation for toilet training should begin when a child starts to notice when they’ve done a wee or a poo, which is a sign they are starting to learn the signals their body is giving them, or, if a child gets to the age of four years old, it is important to start developing a toileting plan (Fleming & MacAlister, 2016).
Preparation
Extra preparation can be key to successfully using the toilet and overcoming other continence related issues.
Preparation could include:
- choosing what words/terms everyone is going to use around going to the toilet
- planning a visual routine – some autistic children find it easier to process visual information – Toilet Time has a range of pictures to create a visual support
- getting a child used to going in the bathroom and understanding what a toilet is for;
- if any behaviours are harmful to them or others, then consider what alternatives can be provided.
Make the bathroom safe and comfortable with equipment such as a toilet seat, foot stools and grab rails if needed. Consider sensory differences and the bathroom environment, such as:
- the toilet flush
- reflective mirrors
- cold tile floors
- noisy fan
- strong smelling cleaning products
- difficulties with balance or body positioning
- the need for additional sensory input.
The preparation should include everyone involved in the care of the child. Trying to teach new routines needs everyone involved to be clear and consistent. It is also important to look at what else is currently going on for the child, such as ability to cope with changes in routine or their overall anxiety levels.
Strategies
Starting points may include:
- raising the child’s awareness of wee and poo
- keeping anything associated with toileting (including nappy changes) in the bathroom,
- changing the child standing up, and putting the poo into the toilet afterwards (be aware this may be the first time they see their poo). Some children enjoy understanding how the body works, what poo is, and where it goes.
Think about clothing and ease of removal. Consider alternatives for certain forms of sensory input associated with:
- wearing nappies could be replaced by wearing tight-fitting pants or shorts, or providing deep pressure in other ways using weighted lap-pads or tight clothing
- the sensation and texture of poo could be replaced by exploring options to increase tactile sensory input in other ways such as fiddle-toys, play dough or tightly fitting clothing
- difficulties with balance or body positioning could be helped by installing grab rails.
Practice sitting on the toilet (without expectation to wee or poo) as part of their daily routine. Be aware though that strategies such as sitting a child on the toilet every 30 minutes can be unhelpful, as it teaches a child that toileting is boring or that they need to empty their bladder every 30 minutes. Introducing a fidget toy can help with learning to sit on the toilet.
Rewards can give feedback and motivate a child. Ensure they are appropriate, immediate, and accompanied with praise.
Some children may use the toilet for wee’s but not for poos; still wanting their nappy on for pooing or using their pants. This is where you may need to use visual supports and rewards to teach them the new behaviour.
Your first step could be getting them to go into the bathroom for a poo. They’re still doing it in their nappy or pants at this stage, you are gradually moving them towards the new way of doing things. Next steps might then include standing next to the toilet, then sitting on the toilet (still with their nappy on), then gradually loosening the nappy or pants.
When addressing specific continence difficulties such as constipation or bedwetting, there are specific National Health and Care Excellence (NICE) guidelines:
It is vital to support children, families and caregivers with clear information about the potential difficulties and the fact that many of these can be overcome. Successes need to be recorded and celebrated, with the ultimate goal of teaching a child to be as independent as they are able to be.
Resources
Fleming, E. MacAlister, L (2016). Toilet Training and the Autism Spectrum – A Guide for Professionals. Jessica Kingsley Publishers.
Victorian Continence Resource Centre (ND) One step at a time
NHS Greater Glasgow and Clyde (ND) Visual aids for learning - toilet training (boy)
NHS Greater Glasgow and Clyde (ND) Visual aids for learning – toilet training (girl)
ERIC, Toilet Time Resource Pack
The National Autistic Society (ND). Toileting
The National Autistic Society, Autism and continence training course
Bladder and Bowel UK (2017). Toilet training children with autism and related conditions – information for parents
Bladder and Bowel UK (2017). Toilet training children with autism and related conditions – information for professionals and carers