Potty training with autism

The Difficulties with Toilet Training a Person with Autism

The topic of toilet training or toileting issues continues to be my most frequently asked question. I’m asked what to do about withholding a bowel movement, toileting readiness, fecal smearing, constipation, continued use of diapers, elimination on the floor or other inappropriate place, and how to teach the toileting process. These are all very important questions that can be hard to find answers to…but why? Because each person is an individual and has their own reasons or issues for having any one or several of these problems.

Both of my children were late toilet trainers, but their issues were quite different. My son took 3 years to train for a bowel movement. He could withhold a bowel movement for up to one week at a time, was frequently constipated, and smeared feces. I always gave up with the training the third week into it because I couldn’t handle the daily clean up. It was just easier to give in and go back to using Pull-Ups. We finally got him trained at age 9.5 years after trying just about everything. The turning point for us on the third try was persisting with the process for 6 weeks. Our son showed signs of getting closer to pooping during the 5th week of training. By the sixth week, he had it mastered. He has never had an accident in 13 years.

What helped me the most mentally was understanding why the fecal smearing was happening. This is a misunderstood behavior and one that tends to be the most upsetting. When a child withholds their stool, it becomes harder in consistency as the days go on leading to constipation. Constipation can cause an itchy anus which then leads to picking to relieve the itchiness and pressure. I believe this why our son was picking – because of the itch and by removing some fecal matter, he could relieve some pressure which allowed him to continue to hold in his stool.

My daughter was quite different. She used to eliminate on the carpet without warning. When she was 6, I told her if she went to the bathroom in the toilet, she could have some Smarties. She replied, “OK” and the process was done in one day. I will never know why she was so easy and my son was not; however, my daughter’s cognitive functioning is higher than my son’s. Both were very late talkers – just before their 5th birthday – and missed most developmental milestones.

Why Are There Toileting Difficulties?

I believe there are two main problems in toileting difficulties. The first one is eating a limited diet and low fluid intake. A diet that is low in fiber can cause constipation, but the biggest concern is fluid intake. If a person is dehydrated, colonic motility slows down so that more water can be absorbed. This results in not only a decreased number of bowel movements, but also stools that are harder, more dense, and drier (Barnhill and Winter 2016).

The other problem is interoceptive awareness. Receptors located throughout the inside or our body, in our organs, muscles, skin, bones gather information from the inside of our body and send it to brain. People with autism tend to have impairment in this area. This means the signal of a full bladder or needing to eliminate does not reach the brain so there is no impetus to get to the toilet or the sensation of needing to go is felt too late (a full bladder to the point of bursting).

I have also heard of individuals who do not understand that different types of toilets are all toilets and you do the same thing in them. This may need to be taught if the toilet at school is very different from the toilet at home (often the case).

Toileting Readiness

Many people make the mistake of thinking toileting readiness is related to chronological age – it is not. In fact, the greater the developmental delay, the greater the toileting delay tends to be. I have never come across any studies that make the connection between language development and toileting, but in my experience the two seem to be related.

Some signs of toileting readiness are:

  • gets a diaper when needs to eliminate
  • goes off to a quiet spot for toileting
  • asks to be changed when a diaper is soiled
  • there is a pattern with elimination
  • the child remains dry at night

Make sure life is stable (no stress from a move, new baby, major illness or divorce) before you start toilet training. Parents should also be emotionally ready as there will be some set backs and clean ups in the early stages.

The Toileting Team

When you decide to start toilet training, have a meeting with everyone involved in the child’s life. This would be grandparents, teachers, babysitters – anyone who may be spending extended periods of time with the child. Decide what language you will use around toileting. Because my children were older with this process, we did not use a potty chair so our words were toilet and all body parts were called by their anatomically correct name (penis, vagina, but we did use the word bum). Everyone should use the same statement when it’s time to go such as, “It’s time to use the bathroom.”

Use the same toileting visuals both at home and at school and present them in the same way (i.e., separate cards on a ring, a horizontal strip or vertical strip).

If the child is small but still using a toilet, use a toilet insert to make the opening smaller. If the child is unbalanced in any way, they may feel too unstable to relax for elimination. Also use a foot stool if their feet can’t firmly touch the floor. Feeling secure and balanced is a big part of relaxing for elimination.

Allow boys to sit for both peeing and pooping. This will help with release and avoid confusion that you have different positions for peeing and pooping. Standing can happen later.

How Do We Start?

Many children don’t even know they are supposed to go into a bathroom to eliminate so start by just leading them by the hand into the bathroom every time they eliminate. Make sure all changing of diapers happen in the bathroom and not in another room. Do not allow other activities to go on during changing time and if you can, have your child help with the clean up. Have them shake the solid waste into the toilet from the diaper so that they learn where the poop is supposed to go. Have them help with wiping.

Some children do not understand how to release their bowels. Telling them to push can cause muscles to tighten. Try blowing bubbles while on the toilet or using a blow-type toy. The blowing action will help the diaphragm to relax and support release.

I also think you have to stop using all diapers in this process and go to underwear. Flipping back and forth leads to confusion. My son was very clever and would hold his bowel movement all day until he knew he was going to get the Pull-Up at night. As soon as the Pull-Up went on, the poop came out. We had accidents moving to underwear, but we had our son help shake all excess waste into the toilet and by the 5th week, he was ready to just sit on the toilet and go.

We did reward our son for using the toilet with one ripple potato chip. He was willing to work for that one chip. We were unable to phase out that reward for several years after the toilet training was completed, but for us it was better to continue with the reward rather than going back to Pull-Ups.

Learning to use the toilet will not look the same for each child. Try to troubleshoot along the way and please feel free to write and ask questions. I am a firm believer that everyone can be toilet trained unless there is a medical issue.

For further reading:

The Potty Journey

What to Do About Smearing

For children:

It Hurts When I Poop!

Liam Goes Poo in the Toilet: A Story about Trouble with Toilet Training

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  1. Anne says:

    You make so many great points, Maureen. I’m here to say that I wish I’d had this advice when he was 5 but my son is now 14 and hasn’t had any accidents in a year, which was partly because we moved.
    I wish I’d known about having him empty his pull-up or thought to have him change his own pull-up, though when he had accidents at home I made him put his clothes and dirty towels in the washer. He was a dehydrated witholder, because he refused to poop in public—we’ve had to leave places when he had the urge. Thankfully he loves those canned seltzer waters and he’s gotten mire regular he just takes forever to go now.

    This is awesome advice for those of you who are there now!

    • Anne, thank you so much for sharing your insight and story about your son. You’ve done great!

      One thing we also have to give to our son once he was into his teens was PEG 3350. https://www.gikids.org/files/PEG_3350_FAQ_formatted.pdf . It is not approved for pediatric use, but we were told to try this on the advice of our gastroenterologist. It really helped our son be regular and not have hard stools. There can be anxiety and fear built up around the elimination of hard stools because it is quite painful. If you decide to give PEG 3350 a try (available over the counter – sold as Restoralax in North America), please consult your physician first. Our son was so constipated that it was affecting his level of food intake and he lost 30 lbs. Any time I tried to increase his food intake, he would vomit. It became a cycle that I did not understand until he had an abdominal ultrasound at the age of 15 which revealed fecal impaction.

  2. Carrie Romeo says:

    Hello I have an 11 year old daughter with ASD. She has been having accidents, more so now with just fecal smearing and she also still wears pads at night because she is a very deep sleeper and resists waking to use the bathroom at night. Her doctor prescribed a bed wetting alarm but I’m not sure if we will have success with it. When I ask her why she is still soiling herself she said it’s because the poop comes out to fast. Sometimes she’ll also say it’s too hard and hurts her. This has been going on since I tried to first potty train her at 3 years old. She wasn’t diagnosed with ASD until last year when she was 10. But now it all makes sense. Any suggestions?

    • Carrie, have a look at the comment I just made to Anne in the post just after yours about using PEG 3350. You may be able to reverse the nighttime trend of pooping if you can get her regulated during the day. In my personal experience, you really have to get rid of any Pull-ups, pads etc. My son was an expert at withholding all day because he knew he’d get the Pull- Up for nighttime sleeping. You can put a plastic sheet around the mattress to protect it. The poop is probably coming out too fast because she is holding it in for a long time until she no longer can. PEG 3350 will also soften the stool. Please consult your doctor before using this product even though it is available over the counter. https://www.gikids.org/files/PEG_3350_FAQ_formatted.pdf

  3. Maureen Blight, Occupational Therapist, Good Spirit School Division, Saskatchewan says:

    Maureen, thank you for this information. I look forward to reading in detail. I concur toileting is a challenging area for children with autism. We support children and families through out work in the schools. Are there any professional development courses forthcoming on this topic? Thank you again.

    • Maureen, thank you for your kind words. I do not know of any training courses on this topic. There isn’t even that much to read in the literature about it. We have 4 autism specific toilet training books, the best one in my opinion being The Potty Journey. Each person seems to have a different combination of issues when it comes to toileting. Messes and accidents tend to upset people and the setbacks can cause great frustration. I am hoping some of my ideas will keep people preserving as it is such an important skill to have.

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