Mum and boy
Toileting difficulties are common in children with autism

Over the last few years an increasing number of parents and carers have contacted the ERIC helpline* for help with toileting issues for children and teenagers who are either waiting for, or already have a diagnosis of being on the autism spectrum.

Around 700,000 people in the UK are living with autism – that’s more than 1 in 100 (Brugha et al 2012). Together with their families, they make up roughly 2.8 million people whose lives are touched by autism every single day.

I knew that toileting difficulties were common in children with autism but I wasn’t sure why. Being offered a place on the National Autistic Society’s (NAS) training session ‘Learning to wee and poo in the right place’ was an opportunity to get a better understanding of the relationship between toileting and autism and to enable the ERIC helpline team to ensure more parents and carers access the right support.

Delivered by Lorraine MacAlister, a training consultant for NAS and Dr Eve Fleming, a Community Paediatrician and ERIC trustee, this insightful one-day course joins up the physical and autistic aspects of problems with wee and poo. Professionals from across the UK attended including occupational therapists, specialist continence nurses, health visitors and learning support staff from mainstream and special schools, as well as one parent.

Using examples of children she has worked with, Lorraine illustrated the complexities of toilet training an autistic child. Instructions such as ‘go to the toilet’ or ‘put the loo roll down the toilet’ may be taken literally by a child who does exactly as asked – goes in to the toilet and comes straight out, or puts the whole roll down the u-bend!

Other difficulties can arise from an autistic child’s perspective of the world and their thought patterns, e.g. “I know I need a wee so you should also know that”. Autistic children won’t necessarily be motivated to wear ‘big boy/girl pants’ to use the toilet as their peers are and may find changing routines stressful and difficult.

How to deal with sensory difference in the bathroom

Between 70% and 90% of children on the spectrum have sensory difference. i.e. being over or under sensitive to not just the five main senses but also balance and body awareness (Adamson et al 2006; Green 2006).

Sensory difference can have a huge impact when teaching an autistic child the steps it takes to get clean and dry and to toilet independently. Preparation is key and simple strategies can be extremely helpful, such as placing handrails around the toilet to help children feel more stable and foot markers on the floor to help boys know where to stand.

If a child seems more interested in posting objects down the toilet or playing with the taps, Lorraine suggests building in other water based or ‘posting’ activities during the day outside of the bathroom.

How to assess whether an autistic child is ready to start toilet training

Dr Eve Fleming covered the physical side of toilet training awareness and readiness. Many children with autism have physical problems affecting bowel and bladder function linked to their rigid eating patterns, anxiety and postponing going to the toilet.

There’s no evidence, however, that children on the autism spectrum have an issue with their bladder or bowel taking longer to mature and it’s best not to leave training too late as this can cause more problems in the long term.

Eve stressed how important it is to take a holistic approach when assessing whether the whole family is ready for training to begin. Starting school can be a great motivator for some children, but very stressful for others. Families also need to make sure they have all the support required.

How to tackle smearing

Several of the attendees had experience of supporting children who smear their poo. This challenging behaviour can be due to constipation, not wiping properly, the child’s way of getting sensory stimulation or perhaps they had an excitable reaction the first time it happened which has inadvertently reinforced the behaviour.

Some of Eve and Lorraine’s suggestions for tackling smearing included asking an occupational therapist to teach wiping techniques and using ERIC’s resources to check whether the child has constipation which needs treating.

Giving alternative sensory stimulation through access to things such as a play therapy aid like moh-doh, water play, cornflour and water, strong smelling handkerchiefs or stickers can be helpful for some children.

Further information about toileting and autism

In another blog about toileting and Autism Spectrum Disorder (ASD) we discuss ways of getting a child with autism to use the toilet and be physically examined by a GP to check their bowels. 

The National Autistic Society has more information about toilet training as well as details of the course Alina attended.

Eve and Lorraine are authors of the recently published book 'Toilet Training and the Autism Spectrum: A Guide for Professionals', which can be purchased from the ERIC shop.

*ERIC’s helpline is open Monday to Thursday 10am to 2pm. Call 0845 370 8008 or email helpline@eric.org.uk. Calls cost 9.6p per minute plus the service provider charge.