Autism and Incontinence

There’s been a lot of talk in the media over recent years about the rise in numbers of children who are not toilet trained by the time they start school. Meaning teachers are finding themselves not only changing nappies during lesson time, but taking on the bulk of the potty training and, often, blaming parents for being too lazy to take responsibility. However, sometimes, there’s a very good reason why a child isn’t continent by the time they start school: autism. As an autistic parent, I wanted to share my tips and experiences.
Autism and incontinence - facts
Learning to use the toilet can be particularly challenging for autistic children and is usually related to sensory issues connected to the condition, physical issues, or communication difficulties - or a combination of all three. Studies have shown that around 20% of children aged over 5 years have delayed bladder control, while that figure jumps to 42% of children aged over 4 years who have delayed bowel control.(Source: https://www.sciencedirect.com/science/article/pii/S1477513115001588​ ) Many of these children also have greater occurrences of urinary tract infections and impaction of the bowel.

Many autistic children take longer to become continent because they are unable to recognise the signals that their body is giving them about needing to go to the toilet; some don’t realise that their bladder is full and they need to go. A common indicator that a child may be ready to toilet train is when they recognise they have soiled or wet their nappy, but in many autistic children, this awareness is not evident. For some, the physical act of opening their bladder or bowels over an open toilet can be terrifying! For others, a lack of appropriate language or communication skills can hinder their continence development.

Autism and incontinence - our story

My daughter showed absolutely no signs of being ready to toilet train at the ‘typical’ age many children start - around 15 - 18 months. We didn’t know she was autistic at this point, although she clearly had some communication and language issues. She had been frequently constipated as a baby and, as she got older, she began to ‘withhold’ - she would not have a poo, holding on to it for days; resulting in mild laxatives being needed. We could see by her stance when she was holding it in, and she would scream in pain when she eventually passed something (I even took photos of the biggest poos to show my husband, they were so massive!). It became incredibly debilitating; if she was having a period of withholding, we found it challenging to leave the house until she was relieved. She was in pain, not eating properly,

tired and miserable. Then there was the fact that she was almost five years old and still wearing nappies, needing to be changed in public bathrooms that didn’t have suitable facilities. Despite the fact she was obviously aware that she needed to poo, she showed no awareness at all that she was wet, and was very resistant to our suggestions that she could try using the potty or toilet.
It was getting to the point where the largest size of nappies available in the stores were just too small. I wish I had known about ​Aeroflow Urology​ at this time. Aeroflow Urology specialise in offering diapers and other incontinence supplies for children like my daughter who suffer with incontinence due to medical reasons. What’s more, I have heard many stories from other parents with older, incontinent children who had to rely on getting there’s delivered in huge quantities and having nowhere to store them. A regular subscription of diapers in larger sizes, delivered monthly to my door, like Aeroflow offer, would have been a lifesaver! What’s more, if your child is incontinent due to Autism or other conditions (such as cerebral palsy or spina bifida), it’s well worth looking to see if you can qualify for this service via Medicaid. There’s more information on this​  here. 

Our story took an unexpected turn when, on the morning of her 5th birthday, she took off her overnight nappy and declared she wanted to use the potty - which she did (although by this point she was way too big and most of it went on the floor!). She asked to wear underwear and, to this day, has been dry day and night for over two years, never wearing a nappy or pull-up again! She’s certainly an all-or-nothing kind of girl!

We were very fortunate that it all happened so quickly and naturally in the end, and her constipation and withholding also improved immensely once she was happy to go to the loo. I believe that leaving her until she was ready was the right thing, but this may not be the case for all children, and some may need much more help and support to become continent, and it could take several years.

Writer: Kelly Kemp: ​www.itsatinkthing.com​ @itsatinkthing

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