Toileting a Girl with Autism

After having two neurotypical children who were toilet trained relatively easily it was all new to us with our daughter Isla who has a rare chromosome disorder causing autism and development delay. The first time we tried at the age of 3 neither Isla or I were ready. After many many accidents we decided to put it off until summer when less clothes were more acceptable and appropriate. It took a number of attempts and adaptions before we had complete success.

A Plan and the Right Equipment

When we tried again there were still no signs that Isla was ready. We were under time pressure this time though with her starting preschool (kindy in New Zealand) so this time we had more of a plan. With Isla being a little bit older she was able to sit on the toilet without a potty which worked easier for us and made more sense to her.

We invested in a decent ring/support to put on the toilet seat and a stool which she would put her feet on. A lot of children with autism, including Isla, often have poor muscle tone. This made it difficult for her to sit on the seat as even though she was big enough she was unsteady. The stool and the seat with her legs at 90 degrees steadied her, letting her concentrate on the task at hand. This was all that was available at the time and she used these consistently until the age of 8. We would pack the seat when going away in our suitcase and when unable to take the stool due to luggage space we would improvise.

Toilet Timing vs Toilet Training

Now the main difference with Isla was she was toilet timed. With my other girls they would tell me when they needed to go. Isla on the other hand wasn’t getting the same signals through so we had to tell her when to go otherwise it would result in an accident. No1s was fairly easy but No2s took some time to master.

Timers and Timing

We used a timer to remind Isla (and me) that is was time to go to the toilet. At first we started going every half an hour and then increased it to every hour. We tried to give her lots of fluids (mostly unsuccessfully). Even if she wasn’t successful, we praised and washed hands and then tried again in half an hour. Admittedly this is easier than it sounds. What would happen is that she would sit and not go but then wet her pants 5 minutes later. However consistency finally paid off and she eventually got the idea.

Visuals

We took photos of Isla and made her a chart of what to do and put it on the wall by the toilet. She had visuals at kindy and was on a toileting schedule for the whole time she was there. Isla had trouble pulling down her pants and pulling them back up. When she was told it was toilet time she would just pull them down then and there and often come out of the toilet with nothing on. Her motor skills have improved with age but we are still working on her modesty at the age of 12.

No1's, No2's and Distraction

Isla couldn’t always feel the sensation of wanting to go so we had to rely on timing and watch her for signs. Crouching down and generally looking pretty uncomfortable were often a give away as well as a tell-tale aroma. We were advised to let her sit with her IPAD and praise and reward instantly when she was successful (even before she got off the toilet (not entirely hygienic I know). We tried to use a reward chart but Isla didn’t really understand its purpose at the time. She was more about instant rewards so she would get a small chocolate as soon as she was successful after a splash of hand sanitiser.

Isla is still unable to wipe herself properly but tries with mixed results. The teaching of this hasn’t come easy for her due to poor motor skills. We are still practicing with the use of visuals and using a hand over her hand technique so she can slowly get the hang of it. We tried flushable wipes as thought they may be a bit easier than just toilet paper but would still end up in a mess.

Leaving the House

They say it’s not a good idea to confuse with a nappy when toilet training but I must admit on our first few outings out the house I wasn’t that confident. However before long we were going out nappy less armed with a couple of changes of clothes and some wipes. We always made sure she visited the toilet before we left, were sure to know where the toilets were and tried to keep to timings when we were out and about.

Night Time

Isla stayed in pull ups at night until about the age of 10. In the end we had to take the pull ups away and use a brolly sheet on the bed to make any progress.

School

Isla is in a Satellite Class at school with extra support so has set times to go to the toilet. This still works the best for Isla as if you ask her if she needs the toilet she will always reply "no". Learning new skills and reaching milestones takes a lot more time with Isla but she manages to master most things in her own way in her own time.